Personal Fundraising

Personal Fundraising

Our Personal Fundraising Initiative has been developed to assist families, individuals, disability support groups or clubs and schools to raise funding towards specialised equipment and aids, intensive therapy, medical and pharmaceutical requirements, respite and nursing assistance, home and vehicle modifications, sport and recreation funding as well as many other areas of support.

How Personal Fundraising can help you:

  • Members are able to raise the funds needed to achieve their goals by using the security of a registered charity with deductible gift endorsement.
  • Sunshine Butterflies will help members create their own personal fundraising page online. 
  • Members are able to send their page link to friends, family and colleagues who can read their story, make a donation and leave a personalised message.
  • Personal Fundraising allows prospective donors to give directly to an appeal of their choice.
  • Creating a personal fundraising page is quick, easy and most importantly secure. Donations are collected online and automatically transferred to Sunshine Butterflies who will then allocate the amount to the individual, family or group once the desired goal is reached.

Families, individuals, disabled groups or clubs wishing to apply for a personal fundraising membership with Sunshine Butterflies, please contact us to apply and we can get started!

Looking to become a member? Click here

Once your membership application is approved, a representative from Sunshine Butterflies will contact you to set up your new profile.

Please contact us find out more about how personal fundraising can assist you.

Campaigns

Fundraising Appeals

Hello, I'm Avalon Chambers

Avalon was born in 2011 at 30 weeks gestation, via an emergency caesarean section. Due to her low birth weight of just 1024 grams and a severe infection, Avalon suffered damage to the white matter in her brain. This is a condition known as Periventricular Leukomalacia (PVL), which i...

Read my story

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\n

As Sunshine Butterflies receives no government funding and exists only through the kind generosity of community members such as yourself, all fundraising\n efforts are greatly appreciated. By supporting this vision to improve the lives of individuals and their families living with a disability, you\n are making a huge difference to many lives suffering tough times.\n
\n

\n

There are many FUN and CREATIVE ways you, your school or workplace can fundraise for Sunshine Butterflies.

\n

We would love to hear from you, so please contact us today and we can have a chat about your idea or help you\n get started to fundraise for a great cause.\n
\n

\n

Not matter how great or small... Every donation helps Sunshine Butterflies to provide an enhanced quality of life and opportunities for individuals\n and families living with a disability.\n
\n

\n

\n
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\n

As Sunshine Butterflies receives no government funding and exists only through the kind generosity of community members such as yourself, all fundraising\n efforts are greatly appreciated. By supporting this vision to improve the lives of individuals and their families living with a disability, you\n are making a huge difference to many lives suffering tough times.\n
\n

\n

There are many FUN and CREATIVE ways you, your school or workplace can fundraise for Sunshine Butterflies.

\n

We would love to hear from you, so please contact us today and we can have a chat about your idea or help you\n get started to fundraise for a great cause.\n
\n

\n

Not matter how great or small... Every donation helps Sunshine Butterflies to provide an enhanced quality of life and opportunities for individuals\n and families living with a disability.\n
\n

\n

\n
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This is Abbey, Our cheeky, funny, music loving, water princess.

\n
She is almost 9 and is half way thru grade 3 at special school. She has an 11 yr old brother with ASD and ADHD and 4 step siblings.\n
\n
Abbey was a dream baby, however I started to investigate a few physical and developmental concerns when she was only 5 weeks old, by 16 months old\n she had been admitted to hospital 5 times, had a CATscan, X-rays, blood tests, MRI and an EEG.
\n
 
\n
By the time she was 2 Abbey had been clinically diagnosed with A-Typical Rett Syndrome, at 8 years old she was finally genetically diagnosed with White\n Sutton Syndrome, Epilepsy, Autism level 3, Global Developmental Delay, PICA, Sensory Processing Disorder, PDD-NOS and Self injurious behaviour.\n
\n
\n
\n
She started walking at 3.5 yrs, she is non stop babbling and signing some very simple words but cannot talk.\n
\n
These were all things we were told she'd never do.\n
\n
These things have all happened due to the extensive amount of therapies she has received. Speech Therapy, Occupational Therapy, Hydrotherapy, Music\n Therapy, Swimming Lessons, Kinesiology and Physiotherapy.\n
\n
We treat Abbey like any other 8 year old, but she still needs many more years of therapy, specialist appointments, medication and hospital stays.
\n
 
\n
Some of these things are not covered by her NDIS package so we use your donations to help purchase these things. She attends an amazing special school\n near our home and loves it!
\n

\n
If you would like to donate towards Abbey's continual progress, we will be extremely grateful and it will be forever appreciated by our family!

\n
Abbey would tap under her chin, which is her way of saying THANKYOU!
\n
\n
Thank you in advance,
\n
Love, Lucy and Josh xoxoxox
\n

 

\n
\n

 

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Hi my name is Abby and I am a beautiful cheeky 3 year old but underneath my smile I hide a lot of pain. For the past 2 1/2 years I have been suffering\n with early onset Systemic Juvenile Rheumatoid Arthritis also known as Still’s disease. It is a rare type of arthritis and it affects all of my joints\n as well as my internal organs and lymp-hnodes.

\n

I woke up when I was 10months old with a sore knee and within 2 weeks could no longer move my limbs or be touched as it hurt all over. I was in and\n out of hospital for 6 weeks before they diagnosed me. I suffer daily from swollen and stiff joints as well as rashes, high fevers, red face and nasty\n side effects from my medication. I have to avoid direct sunlight as the steroids and chemotherapy tablets I am on make my skin prone to burning to\n the point of melting, the medicine also makes me bloat and it is very strong. I have a very weak immune system as arthritis is an autoimmune disease\n as well as my medications being immune suppressants, so I get sick a lot and I have to be very cautious when we are out not to share anything with\n other people and to avoid anyone who might be sick as my body doesn’t have the ability to fight the germs. I have been hospitalized 4 times this year\n from complications due to normal childhood illness, most recently I was hospitalized due to a common flu which turned to systemic infection causing\n me to have convulsions and hallucinations with severe temperatures.

\n

My family and I had to move from the coast to Sydney so I could be close to the wonderful doctors and constant treatment but we have since moved back to\n south west rocks as living in Sydney seem to make my health worse and the Dr said it was due to overpopulation and high germ factor. As well as my\n daily medication I have steroid injections every 4 months to all my joints via day surgery to help me get movement and some comfort, I try and be brave\n but its scary!! Its also hard on my family seeing me so sick and scared as well as being very costly as the government doesn’t fund juvenile arthritis\n and Centrelink said they don’t recognize my disease yet, it costs my mummy and daddy around $1000 a month for all my treatments and medications.\n I also have to have fortnightly blood tests which is a battle as I don’t like it and my arms are scarred from having so many needles making it\n hard for the nurses to access my veins the only thing i like is the wiggles band-aid at the end. I have to have my eyes checked with the ophthalmologist\n every 8 weeks to make sure my eyesight isn’t diminishing which is a common occurrence linked to arthritis which recently has been giving me problems\n with vision in my left eye making it hard for me to see.

\n

The doctors can’t give me a future prognosis and there is no cure we just have to take day by day and hope the pain isn’t so bad. We appreciate all your\n support and kind donations which go towards the costs of my medical treatments and the travel expenses to and from the hospital in Sydney.

\n

Abby xx

\n

 

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\n

Avalon was born in 2011 at 30 weeks gestation, via an emergency caesarean section. Due to her low birth weight of just 1024 grams and a severe infection,\n Avalon suffered damage to the white matter in her brain. This is a condition known as Periventricular Leukomalacia (PVL), which is commonly fatal\n to premature babies.

\n

Avalon spent eight weeks in the NICU and SCBU units in total. She was the 'Feisty' child according to the nurses, which we came to realise was a blessing,\n as she will need all of that strength for the life journey she is on. By the time Avalon left hospital she was 37 weeks gestation and weighed 2.2\n kg. This weight is half the weight of a healthy child born at full term. When Avalon was one year old she was diagnosed with Cerebral Palsy spastic\n diplegia and dystonia. Avalon's condition affects one arm, both of her legs and her balance.

\n

From 33 weeks gestation, Avalon has been seeing Physiotherapists, Occupational Therapists, Speech Therapists and Specialty Therapists. She has responded\n well to all of these therapies and really enjoys the interaction and the feeling of achievement she gets.

\n

\n
As parents, we are constantly on the lookout for treatments and specialised equipment that will give Avalon the best opportunities. In 2013, we\n discovered a treatment centre called NAPA Center, in Los Angeles. The centre specialises in Intensive therapy, which utilises a special suit. Three\n weeks of therapy at The NAPA Center is the equivalent to twelve months of traditional therapy, and combined with all of the regular therapies she\n requires, the results are very encouraging. In March 2014 Avalon completed a three week Intensive Model of Therapy (IMOT) with outstanding results.\n If we can continue to provide these intensives three times a year, along with the specialised equipment and regular therapies she requires, Avalon\n will have a very good chance at gaining some valuable independence in her life.

\n

In November 2017, Avalon had an incredible surgery in the United States called Selective Dorsal Rhizotomy (SDR). This surgery has permanently removed\n all of the muscle tightness in her legs that cerebral palsy has caused. The surgery has greatly reduced any chance of muscular and joint deterioration\n in the future, allowing Avalon to live in a body that will not wear down and cause her immense pain. The cost of the surgery including air fares\n (travel), accommodation and living expenses was AU$130,000.

\n

Following the surgery Avalon has started her extensive rehabilitation program. This involves years of regular and intensive therapy, including a special\n trip to Step By Step therapy in New York, USA. The therapy will allow her to grow muscles that have never previously been used due to the muscle\n tightness, and to gain the strength she needs to continue forward in her ‘new’ body. Our annual therapy cost is now more than $60,000 which is\n virtually impossible to meet, but how can we put a price on her independence.

\n

This opportunity for Avalon was an amazing one and she was extremely lucky to have been selected after meeting strict criteria. With the correct rehabilitation,\n Avalon will achieve amazing things!!

\n

We thank you for helping Avalon to have that chance xx

\n

 

\n

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\n

Meet Beau, our brave little boy who has a heart of gold and an infectious smile. Beau is only 6 years old and throughout his short life, has faced\n and conquered many challenges. Sadly for Beau, these challenges are continuous and there are many more ahead as he has a condition called Prader-Willi\n Syndrome.

\n

Prader-Willi Syndrome cannot be prevented nor can it be cured. Because of his condition, Beau suffers from low muscle tone, no thermostat to regulate\n his body temperature, respiratory problems and a compromised immune system leaving him prone to lung infections, he also suffers development delays\n and short statue requiring growth hormones to control. To be eligible for the growth hormones, Beau is required to keep under a certain weight\n and the difficulty with this is people with Prader-Willi Syndrome are ravenously hungry and weight management is a constant issue for them.

\n

To help with Beau’s weight management and other symptoms, he is required to be involved in regular exercise and therapy programs. These include; swimming\n lessons, a personal trainer numerous times per week, speech therapist, physiotherapist, occupational therapist and a specialised dietician. These\n all come a huge cost for our family so we have set this page up to help relieve some of the financial pressure and still being able to provide\n Beau with the care and support he requires.

\n

Your support and generosity is so greatly appreciated by our family and will make such a difference in our life. From the bottom of our heart, we thank\n you!

\n

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In memory of our friend, colleague and loved one Bevan, we would like to raise much-needed funds for Sunshine Butterflies Disability Support Charity on the Sunshine Coast.

\n

In lieu of flowers, we ask that you donate to Sunshine Butterflies Disability Support Service as was Bevan's wish.

\n

Bevan always admired the work carried out by Sunshine Butterflies \n , providing much needed support services for people living with a disability, and their families.

\n

Sunshine Butterflies \n was founded by someone touched by disability, to support and improve the lives of people living with a disability and their families.

\n

A registered NDIS provider, Sunshine Butterflies provide a range of educational and recreational disability support services including: early intervention\n programs, sporting and recreational programs, wellbeing and therapy services, plus vital life skills programs such as Cooking.

\n

Sunshine Butterflies offers a ‘one-stop-shop’ for disability support services, at their unique property ‘Our\n Backyard’, a purpose-built, tranquil 5 acre oasis in the Noosa countryside.

\n

They also offer families Respite, Counselling and Support Services and assistance with NDIS Advice and Planning.

\n

Their daily post-school educational and recreational programs include 'Kiss My Art' art and craft program, 'Chippie's Corner' woodworking program, 'Rockability' music program, 'Rhythm & Soul' acting and singing program, 'Our Farmyard Cooking School' program,\n plus their Community Access programs such as Ten Pin Bowling, Shopping, Information Technology, plus Wellbeing and Fitness programs such as Horse Riding,\n Boxing, Sailing, Indoor Rowing and much more.

\n

They are also now offering a new Animal-Assisted Therapy sessions with their qualified Animal Assisted Therapist, and Animal Farm Play Sessions as part\n of the 'Farmability' program.

\n

Their experienced, qualified and caring disability support staff at Sunshine Butterflies, are handpicked to offer the very best\n of care.

\n

‘Our Backyard’ is home to numerous friendly farm animals that include; Cows, Goats, Sheep, Donkey, Ducks, Chickens, Geese, Guinea Fowl, a Peacock and 2\n miniature horses. These furry and feathered friends help to deliver their unique animal enrichment program to individuals living with disability.

\n

For more information visit: www.sunshinebutterflies.com.au

\n

 

\n

 

", "itemId": 8808722, "name": "Bevan Brennan Memorial", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/bevan-brennan", "url": "/personal-fundraising-members/bevan-brennan", "releaseDate": "2019-12-09T00:00:00", "releaseDate_raw": "2019-12-09T00:00:00", "expiryDate": "2099-01-01T00:00:00", "expiryDate_raw": "2099-01-01T00:00:00", "lastUpdateDate": "2019-12-09T12:40:05.273", "lastUpdateDate_raw": "2019-12-09T12:40:05.273", "counter": 5, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/bevan-brennan?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=8808722&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401338", "Location": "Sunshine Coast", "Image": "/Images/personal-fundraising-images/BEVAN.jpeg", "TEMP - Old URL": "" }, { "description": "

\n

Casey Jean is 9 years old and has an epileptic encephalopathy with CSWS (continuous spike wave syndrome). The CSWS causes progressive disturbances\n in cerebral function as her brain is never truly resting (like a constant electrical storm in her brain) which results in associated issues of\n intellectual impairment, autism, epilepsy, attention deficit disorder, sensory processing disorder, extreme hyperactivity and lack of impulse control,\n motor control issues and behavioural disturbances.

\n

In other words, she is a handful! She is prone to unpredictable prolonged seizures requiring rescue medication that occur during the night. We are\n in the process of training an assistance dog, Max to alert us to Casey’s seizures which will allow her to sleep on her own, in her own bed, creating\n independence as she grows older.

\n

Casey’s condition requires complex, aggressive treatment with heavy medications, most with significant side effects, as well as ongoing therapies to\n keep Casey on an upward learning curve rather than her skills spiralling into regression.

\n

Casey does well with her weekly therapies but because she finds it very difficult, resistive behaviours hinder her progress.With Max by her side during\n these sessions he helps her to keep her focus and increase her interest in activities – the possibilities really are endless in tasks for Max during\n therapy lessons ie he chooses which colour pen to use, use dog treats in many different ways to aid with fine motor skills.

\n

A well trained assistance dog can notice and respond to changes in a person’s sensory level and intervene and help eliminate a potential meltdown.\n The dog can provide proprioceptive feedback for Casey (proprioception is how our bodies move and feel in space) as her proprioception is out of\n balance – deep pressure from Max and moving her hands through his thick coat can help get Casey’s proprioception back in sync therefore her thought\n process will then be more in sync.

\n

It can be a challenge for Casey to access the community safely. She is at constant risk of wandering and her communication issues prevent her from\n responding when called.She also has no sense of danger and will run straight into the street. Max is undergoing intensive training which will qualify\n him with public access so he may accompany Casey many places which will help her gain social acceptance and involvement as well help keep her calm\n and focused in public situations.Max will be anchored to Casey and help keep her safe and prevent her from running off.Max will also be trained\n to search and find Casey should she get lost in certain situations.

\n

The dog will also play a role in helping to improve Casey’s speech and sentence structure and commands as well as her self-care awareness. Her challenging\n behaviours will be better managed when she has her dog constantly by her side, protecting and encouraging her. Ultimately Max is in training to\n assist and respond to Casey’s individual and unique needs which is a very exciting concept indeed!

\n

We have created this page to help ease the financial pressure of the expensive specialised training, vet bills and for other ongoing care for the dog.\n The opportunity to have an assistance dog like Max join our family has already made such a huge difference to our entire family and we would like\n to express our gratitude for your interest and support in helping to make this opportunity a reality. Thank you.

\n

\n
", "itemId": 6401351, "name": "Casey Mackay", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/casey-mackay", "url": "/personal-fundraising-members/casey-mackay", "releaseDate": "2016-08-30T00:00:00", "releaseDate_raw": "2016-08-30T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-14T14:02:24.087", "lastUpdateDate_raw": "2017-02-14T14:02:24.087", "counter": 6, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/casey-mackay?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401351&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401333", "Location": "Brisbane", "Image": "/images/personal-fundraising-images/Max and Casey.JPG", "TEMP - Old URL": "" }, { "description": "

\n

This is the story of our gorgeous 2 1/2 yr old daughter Charlie Grace.

\n

Charlie was born three months premature weighing only 900grams. She was brought into the world early via caesarian at The Mater Mothers Hospital in\n Brisbane on St Patrick’s Day 2013. Charlie had a traumatic start to life. A roller coaster ride of ill health, rare complications and unfortunate\n events. During her 92 days in NICU at the Mater, Charlie suffered multiple infections, surgeries, a broken arm, four blood transfusions and other\n medical complications and challenges. At each turn Charlie defied the odds and finally was discharged home. She was in a fragile state for a long\n time at home and required a Stoma bag and 24 hour a day Oxygen. It was a constant struggle for a long time with many set backs and return visits\n to hospital. Gradually Charlie grew healthy enough to no longer require the oxygen and Stoma bag.

\n

Charlie’s development was significantly slower than most. It was hoped that this developmental delay was due to her rough start, however after genetic\n testing, it was revealed that Charlie had a rare Genetic condition called Mowat-Wilson Sydrome.

\n

Mowat-Wilson Syndrome (MWS) is so rare that there are less than 200 diagnosed cases world wide. MWS affects intellectual and Physical development.\n Many children with MWS have global developmental delays and speech is absent or severely impaired. It also can be accompanied with heart defects,\n Hirschsprungs Disease, Epilepsy, Microcephaly and other anomalies. On the flip-side, people with Mowat-Wilson Syndrome ALWAYS have a sunny disposition,\n show their affection openly to those they love and are very social. They understand more than what they are able to communicate.

\n

Despite the continual threat of seizures, physical disability, poor sleeping patterns, feeding issues and other daily battles, Charlie’s determination\n and excitement for life only grows larger and brighter. She receives ongoing treatment from Physiotherapists, speech and occupational therapists,\n nutritionists, cardiologists, neurologists and music therapy.

\n

We have set up this page to try and ease some of the financial pressures and help Charlie get everything she needs. Specialized equipment such as standing\n frames, walking devices, bathing & showering aids, special needs prams, beds, home modifications and lots of therapies (such as physio) are\n some examples. Charlie is not yet crawling, walking or sitting. We are working toward getting her to move independently. Charlie will ALWAYS require\n 24/7 care for the rest of her life. She cannot attend daycare so In-home support and respite for us is very important and positively impacts the\n quality of care that Charlie receives.

\n

One of the biggest decisions we face at present is whether to renovate our home to suit Charlie’s needs or in the near future move to a home and modify.\n We love our house, but it is not suitable for Charlie due to having stairs and various other design issues.

\n

Finally, it has to be said that we’re not really sure exactly what needs Charlie will have in the future given that her Syndrome is so rare and not\n a lot known about it. However, her greatest need of all is LOVE and she will always have plenty of that!!

\n

Charlie, at two and a half years old, continues to defy the odds. She is a very happy little girl and takes great delight in the small things. Her\n laugh is infectious and she has great sense of wonder. On meeting Charlie, one will realise how special it is to be in the presence of someone\n who has the ability to be truly joyful and display their love and affection unconditionally. In some ways she is the embodiment of what we all\n aspire to be – Happy!

\n

Thank you for your support and generosity! If you would like to follow Charlies journey please like her page on Facebook – Unite for Charlie\n

\n

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\n

I’ve never understood why some of life’s biggest battles were given to the smallest of children. That was until I met my son, our first child, 17 months\n ago. Who knew such a tiny creature could have the heart of Phar Lap, the courage of a lion, and the bravery, resilience, and fight, of a full grown\n man. This page has been set up to Help Cooper Eat, because sometimes even superheroes need a helping hand. Our boy Cooper, has already endured\n more in his short time on Earth, than most would in a lifetime. Here’s his story…

\n

Cooper suffered very serious birth complications, which resulted in our baby boy being born lifeless. He went into cardiac arrest after becoming stuck\n during delivery, and required life- saving medical intervention for the first two weeks of life. We spent a month in hospital, and his ill health\n and associated risks of attempting to feed, prevented him from developing and establishing the early feeding skills infants instinctively use in\n their first weeks of life. From day one, until 13 months of age, he was fed all nutrition through a Naso- Gastric Tube (tube inserted through his\n nose, and into the stomach), which came with an enormous amount of responsibility, problems, and ongoing trauma for Cooper. From very early on\n he had been defensive and frightened of anything that resembled, and reminded him of, the intrusive medical intervention he received in hospital.\n A bottle, spoon, sippy cup, teething toys etc, were all seen as threatening through his eyes. This aversion to eating and drinking left our 13\n month old son with an escalating dislike of food, and meal times in general, as well as significant developmental delays, problems with weight\n gain, limited and unco-ordinated oral motor skills, serious bouts of gagging, choking and vomiting, and every two weeks we took him back to hospital\n to have his tube replaced. This experience was always very traumatic to say the least, and set us back once again on our difficult journey to help\n Cooper eat.

\n

For Cooper to progress to eating and drinking like his peers, he required intense daily therapy in a safe and familiar environment, and a tailored\n tube weaning plan from experts in this specialised field. Unfortunately Australia has limited expertise in this field. In May last year, we embarked\n upon a huge four months of fundraising to bring an expert in this specialised field- Dr Markus Wilken, to Australia from Germany. Markus is a Clinical\n Developmental Psychologist (Owner and Director of the Institute of Paediatric Tube Management and Weaning), and he was able to single- handedly\n provide the tube weaning treatment Cooper desperately needed, which was not available to him in this country. This rapid tube wean was not easy,\n it was an incredibly exhausting and stressful two weeks for all involved, however at the end of this time, we made some amazing discoveries, and\n incredible progress, that we never had a hope of achieving without Markus by our side. We were thrilled to find that Cooper could eat and drink,\n and do both quite well, considering he had never done either in his life. He could also do both safely. Markus gave us the skills, tools, confidence,\n and knowledge, to help our son become an eater, and he gave him the gift of a more independent and normal life.

\n

At the end of the wean, unfortunately the feeding tube was still in place. Cooper was eating, and eating well, however he wasn’t drinking enough fluid\n to stay hydrated and thrive. We made the difficult decision in October to have a PEG (percutaneous endoscopic gastronomy) feeding tube placed in\n his abdomen, so the naso- gastric tube could be removed. Within twenty four hours of the new feeding tubes placement, Cooper became gravely ill,\n and we found ourselves running beside his cot on the way to theatre, signing consent forms, so our son could have emergency washout surgery. Surgery\n that would save his life. He had suffered secondary peritonitis, as the PEG leaked, and within hours of developing this condition, an incredible\n infection spread throughout his entire abdominal cavity. Cooper was taken into theatre, and we were given no indication of what the outcome would\n be, it was terrifying. How could we nearly lose our son again??! Cooper spent a month in the PICU fighting for his life, and our brave little soldier\n survived. For the next month and a half we battled a gaping hole in his abdomen, which was too big for any Mic-Key button (during the washout surgery,\n the PEG and it’s backing were ripped through his abdomen wall, essentially tearing it apart, as a PEG should not be touched for three months. The\n PEG was then replaced with a Mic- Key button, which is a low profile, much smaller feeding tube) they had, and Cooper had to then endure VAC (vacuum\n assisted closure) dressings which gave him third degree burns, silver dressings, poking, prodding, being fed by NJ (Naso- Jujenal) tube into his\n intestine…. We found ourselves in a worse situation than before we started all of this, with a little boy who had become terrified and defensive\n of everyone again, was completely battered and bruised, and who was not allowed to eat or drink anything orally for this whole length of time in\n hospital. Prior to September we had a boy who refused to eat orally, no matter how much we tried to encourage it, and now we had a boy who was\n now desperate to eat, but we had to refuse him, as his stomach was so damaged from the surgeries, it was leaking uncontrollably, so it couldn’t\n be used.

\n

Fast forward till now, and the last three months have had a damaging effect on Cooper’s eating and drinking. Every spoonful or sip is quite an ordeal,\n we have an unpredictable and unreliable feeding tube, Cooper has lost weight again, he is also very confused and angry about all that has happened…\n Understandably. He has taken an emotional and psychological battering, as have we all, and we now need the assistance of Dr Wilken again, to combat\n Cooper’s feeding issues once and for all. This time though, we will need to bring in the big guns!

\n

Markus has a speech and language pathologist that travels the world with him, to assist in the most intensive and tricky weans. Cue Stephan Echtermeyer,\n an experienced speech therapist (owner and director of Sprachpuzzle), the hands- on master, who specialises in tube weaning and Castillo Morales\n Therapy.

\n

How Can You Help?\n

\n

With your generous support and donation, you can provide Cooper with the opportunity to combat his psychological fear and anxiety towards eating and\n drinking once and for all. The money raised will be used to bring two experts in this specialised field- Dr Markus Wilken, and Dr Stephan Echtermeyer,\n to Australia from Germany. Markus and Stephen will be able to provide the life- saving, consistent and intensive tube weaning, and psychological\n treatment, Cooper desperately needs to get back on track, and look towards a tube free future. You will give our son the gift of a more comfortable,\n safe, independent and normal life, with substantially less doctor, specialist and hospital visits.

\n

For a detailed account of Cooper’s birth, the Rapid Feeding Tube Wean in September with Dr Wilken, and our previous two months in hospital after the\n PEG surgery, please visit www.facebook.com/helpcoopereat\n

\n

Thank You!

\n

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\n
Hi, our names are Tammy and Nathan Goodwin and we have a gorgeous 5-year-old (turning 6 in August 2019) son called Cruz.
\n
 
\n
Cruz has a rare chromosomal disorder called 2q37 Deletion Syndrome. This syndrome has resulted in Cruz (and our family) having to live in hospital for\n the first year of his life, with many short stays after that. There are only around 100 reported cases of this syndrome worldwide.
\n
 
\n
Cruz’s two most significant issues resulting from his syndrome are that he has major Gastro Intestinal problems, and developmental delay. His gastric problem\n meant that Cruz's bowel kept twisting and he has sadly been unable to drink or eat anything orally since he was 3 weeks old. His stomach and bowel\n had not worked since birth. His time in hospital has resulted in numerous surgeries, infections, blood transfusions and many more horrible complications\n along the way with long periods of time in the Paediatric ICU. Cruz's needs are high, and always will be.
\n
 
\n
His developmental delay issues means Cruz struggles to reach ALL of his milestones. Cruz can sit unaided, however is still learning to crawl, stand and\n walk. Another area which is extremely delayed is Cruzs’ speech. He is able to say around 30 words now and has been learning sign language for some\n years. He can sign around 15 words correctly now too. We had a breakthrough in 2018 with him signing back quite a few words, and he is a lot less frustrated\n being able to communicate with us now.
\n
 
\n
Cruz also suffers from a genetic duplication, specifically 12q24.11 to 12q24.33, a tethered spinal cord which will require surgery if and when it starts\n affecting his lower body functions; GORD (Gastro Oesophageal Reflux Disease) resulting in vomiting every day since birth so far; an oral aversion;\n feed intolerance; easily susceptible to viruses and infection; difficult to intubate and numerous failed extubations; breathing difficulties requiring\n oxygen on many occasions; a very high tolerance for opioids which means he is difficult to sedate and keep sedated and requires weaning periods; and\n a sleeping disorder to name a few.
\n
 
\n
Cruz had life threatening bowel surgery on 20 February 2015, which so far has proved to be successful and a turning point in our lives. Cruz has since\n been able to be fed into his stomach via a Mic-key button every 4 hours, and water is given through this button to keep Cruz hydrated. Cruz has also\n had eye lid surgery to correct his lazy eye and improve his vision. Tammy has only this year been able to return to work part time during school hours\n while Cruz is at school. Nathan is self-employed and, due to the expenses associated with giving Cruz as many opportunities as we can and access to\n as much therapy as is required, Nathan works six days a week with very long hours. Cruz has many outpatient appointments on a weekly basis, along with\n physiotherapy sessions, speech therapy and horse riding for the disabled. Cruz now attends school and is in Prep. This was a huge milestone for us\n seeing Cruz go to school, and the best part is that he actually loves school. Cruz has specialised disability equipment at home such as a wheelchair,\n a walker, supportive seating, a physio mat and a special bathing chair.
\n
 
\n
Both myself and Nathan are unable to become Australian Permanent Residents at this time, but are still working on it. Currently we do not fit in to any\n of the categories in which can apply. Cruz has also been denied NDIS sadly. Cruz was born in Australia, but that sadly does not make him an Australian\n - he is still considered a New Zealand Citizen by decent until he is 10 years old. This has proven to be very hard for us in the way that we are not\n eligible for any funding from the Australian Government to help towards therapies or equipment for Cruz.
\n
 
\n
Moving back to New Zealand is not an option for us at this time either. It is too risky for us to move Cruz outside of Australia. Given Cruz’s medical\n and health issues to date, we have a great team of medical professionals who know Cruz well and he remains under their care. Additionally, Cruz’s medical\n advice to date is that the climate in Queensland is much better for Cruz’s health and wellbeing. As a result of being ineligible for any assistance,\n we have to pay for the therapies Cruz needs by ourselves and sadly, nothing labelled \"special needs\" is inexpensive.
\n
 
\n
We are proud to say that Cruz is the happiest little boy and can always manage a smile no matter the circumstance. He is getting very cheeky now and has\n quite the personality. He is so very loved and gives us a lot of love and affection back. He is a lovely little boy who is very caring, he likes to\n share everything, he is gentle with others and I can already see what a loving boy he is becoming.
\n
 
\n
Our most sincere heart felt thank you for any donation towards Cruz to help our precious boy who deserves to live life to the fullest. Any donations will\n be used towards therapies such as physiotherapy, occupational therapy, speech therapy and horse riding for the disabled.\n
Thank you xxx\n
\n
\n
\n
If you would like to follow Cruzs’ progress, please take a look on his Facebook page, Cause for Cruz, www.facebook.com/causeforcruz/\n
\n
\n

 

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\n

My son Dominic is 10 years old and was born with Cerebral Palsy. We have received support over the years for equipment he needs, and growing assistance\n from the NDIS. Dom is unable to walk and has very limited use of both arms. He is bright and doing well at school. However as he gets older, he has\n a growing awareness of what he is unable to do on his own. He is tall and though thin, he's heavy to lift into and out of the car to get him to and\n from school, other activities that he likes, and Doctor’s Appointments. We are unfortunately not yet able to afford a large enough vehicle that could\n be converted to allow him to be lifted into a vehicle while on his wheelchair. We're trying to raise enough money to purchase a vehicle that the NDIS\n could arrange to convert for disability use. It would mean the world to us to have Dominic's sense if independence and confidence grow with the freedom,\n ease, and safety, of wheelchair accessibility to a van or utility vehicle.

\n

Thankyou in advance for hearing our story. We will be forever grateful for whatever contribution you might make. Now, Dom wants to share some of his thoughts\n and wishes:

\n

\"Hi, my name is Dominic & my best friend is EVO my scaly breasted lorikeet - he is my best friend because I met him in Darwin. By the way I sometimes\n like to tell big stories because I have a big sense of humour.

\n

I love playing my Xbox and iPad, watching movies, WWE wrestling (I love to practice my wrestling and have mastered my own finishing moves). I am very inquisitive\n and ask lots and lots and lots of questions about everything. I have lots of friends at school and have a very vivid imagination which allows me to\n travel many places. Recently when I went to Brisbane to visit my Nana, my cousin Nic and I went to China every day without leaving the front bedroom.\n When I was there I also taught my Nana all she ever wanted to know and more about WWE wrestling which helped her to answer a question on Millionaire\n Hot Seat one afternoon.

\n

I am in Grade 5 at Kirwan Primary school, but I love school holidays the most. When I grow up I want to go to University and build robots like in the movie\n Real Steel or maybe be a pilot. By the way I forgot to mention I have Cerebral Palsy that’s why I’m asking for help so we can buy a new car.

\n

I am not fussy but I would like a blue car with tinted windows, air conditioning (so I can travel home in summer without sweating because I live in Townsville),\n have a stereo so I can listen to Ed Sheeran who I have the same coloured hair as, a cup-holder for my Frozen Coke or Frappe, personalised number plate\n saying EVO07 and also one that I can ride in while sitting in my wheelchair.

\n

If I was ever so lucky to maybe one day have my dream car the first place I would like to go is school ha - ha just kidding. Maybe the Strand Water park\n or take EVO on a holiday down to my Nana’s place.

\n

I asked my family to write a something about me….

\n

NANA - My beautiful grandson Dominic has Cerebral Palsy. He is a bright intelligent boy who has loads of personality and in my opinion just needs the chance to reach his full potential. Please help him achieve that goal.

\n

Big Lily (Helen) and Barb - Dominic is a bright, curious and engaging boy whose horizons would be immensely broadened if he had easy transport adapted to accommodate his wheelchair. Many more chances to go and do what he'd love to do.

\n

Aunty Emma -When I saw Dominic play soccer for the first time, I was overwhelmed with emotions; pride, joy, amazement....As Dominic hopped around on his knees, then elevated himself up with his good arm/hand he somehow flicked himself around and kicked the ball with the top of his knees BOOM the ball went flying. I knew then that Dominic has no limits only the limit that people will put on him\"\n  \n

\n

Aunty Jane & Uncle Garry – Our nephew Dominic is one very Special young man. Dom has a huge heart and lots of love to give everyone. Dom is very considerate of others before himself (he likes to make sure that his Mum is always ok).Dom has an infectious personality and you are easily drawn to him.

\n

Dom is very into wrestling & has quite a few special moves, which he loves to show us when he visits. Having CP has not limited him in his passion of wrestling\n .If anything it has shown us that Dom has no limits & will achieve great things.

\n

Ivy (17) - Dominic is one of a kind. The most amazing soul. Always happy and brining joy to everyone. Most of all he has an amazing\n personality and deserves the best in life. He has had it rough but in the end the kid never gives up. Always putting a smile on his mother’s face and\n everyone else. 

\n

Kurtis (14) –I don’t get to see Dominic very much but I can tell you one thing he is the funniest kid I have ever met. He always makes me laugh and is the best cousin I could have asked for.

\n

Nicholas (11) – Dominic is a very funny, happy handsome

\n
\n

 

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Hi my name is Finlay and I’m 9 years old.\n

\n

 

\n

 

\n

I was diagnosed with a genetic condition called Spinal Muscular Atrophy, commonly known as SMA when I was 18 months old. SMA is a rare inherited disease\n resulting in the loss of nerves in the spinal cord and weakness of the muscles connected with those nerves.\n

\n
The muscles most frequently affected are those of the neck and trunk that control posture, those of the legs and arms that control movement and those of\n the area of the ribs that help breathing. There is no known cure for SMA and 1 in 35 people carry the gene.
\n
I was fortunate enough to be classified as a type 3 due to being able to walk, however I lost that ability around 6 years of age and require the use of\n my wheelchair to get around. I struggle with respiratory at night and use a breathing machine to help. In the near future I will need spinal surgery\n to help with scoliosis. I rely heavily on the support of my family to toilet, shower and help manoeuvre my way around this world.\n
\n
I have weekly hippotherapy sessions and attend hydrotherapy twice a month. My mum and dads aim is to keep me as mobile as possible. I love to swim\n and attend disabled surfing 3 times a year, go fishing (I never catch anything) and playing Xbox! I will never run at school sports days, climb a mountain\n or ride a bike with my friends but in spite of my limitations, I have a happy outlook on life and a bright future (as a professional gamer!)
\n

My parents hope to raise money to assist us in funding a stand to sit Powerdrive Wheelchair. 
\n
 
\n
This wheelchair will allow me to weight bear on my legs for bone growth and to help with the curvature of my spine. As I get older, a stand to sit wheelchair\n will allow me to stand just like the other kids, communicate with my peers and socialise at their height. It will give me a greater freedom of movement\n and independence.\n
\n
\n
Mum and Dad say they are blessed to have such a happy boy and I am here to teach people that they should be grateful for the life they lead and never take\n it for granted. My family and I thank you for taking the time to read my story. Your support and generous donations will go a long way to helping me\n live my life to the fullest.
\n
\n
Big hugs and kisses from Finlay xo
\n
\n
If you would like to know more about my condition please contact\n
my mum and dad (Lyndsey & Graeme) at:  cav_78@hotmail.com
\n
\n

 

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", "itemId": 6401359, "name": "Finlay Mair", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/finlay-mair", "url": "/personal-fundraising-members/finlay-mair", "releaseDate": "2016-09-20T00:00:00", "releaseDate_raw": "2016-09-20T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2019-10-09T10:36:29.493", "lastUpdateDate_raw": "2019-10-09T10:36:29.493", "counter": 11, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/finlay-mair?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401359&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401338", "Location": "Sunshine Coast", "Image": "/images/personal-fundraising-images/Finlay 2019.jpg", "TEMP - Old URL": "" }, { "description": "

We welcomed Francisco (Franki) Jules Moura on Mother’s day, 2016. Shortly after delivery, we were shocked to discover that he was born with several birth\n abnormalities. The most noticeable and concerning to his pediatrician and us was his Sagittal Craniosynostosis. Craniosynostosis is a birth\n defect that consists of premature fusion of 1 or more cranial sutures, resulting in an abnormal head shape. Franki’s head was long and cone shaped\n at the back and resembled that of a boat.\n

The day we took Franki home from hospital was also the day we started his medical journey. The pediatrician organized us to see a craniofacial plastic\n surgeon, who told us Franki would need to have spring assisted craniofacial surgery to open the fused suture in his skull to enable his\n brain to grow normally. Along with an extensive medical team of neurosurgeons and plastic surgeons, Franki’s craniofacial surgery was scheduled\n for when he turned 3.5 months of age.

\n

At 1 month of age, during a routine 4 week check up, it was noticed by his pediatrician that Franki had an inguinal hernia that had\n to be removed as soon as possible. Three days later, Franki was in theatre to remove this as well as have a left Orchiopexy procedure\n to correct his other Cryptorchidism birth defect.

\n

After Franki’s cranial surgery, and at about 4 months of age, Franki still hadn’t grown out of being a highly irritable baby, who cried for long periods\n at a time and slept very minimally. It was then that we sensed there was more to our beautiful blue-eyed baby boy than we had previously thought.

\n

Naturally, we were becoming increasingly concerned about his vision and delayed gross motor function and so we took Franki to a private pediatric ophthalmologist\n who told us he suspected DVM (delayed vision maturation) and we were told to wait until he was 6 months old to review. It was also at this time\n that we started taking Franki to a private physiotherapist to see if there was anything we could do to also progress Franki’s gross motor skills.

\n

After numerous pediatrician appointments, Physiotherapy appointments and ophthalmology appointments in addition to many visits to ED at PMH, Franki’s\n development was falling behind. By his sixth month, he was still not visually attentive and it became very obvious that he was not meeting his\n developmental milestones. It was also at this age that Franki was again in theatre to have his right Orchiopexy procedure to finish correction\n of his Cryptorchidism birth defect.

\n

By 7.5 months of age, a highly irritable Franki was once again admitted to PMH where we were given the diagnosis of Global Developmental Delay, by\n one of the Developmental Pediatrician’s, and were told to prepare for the real possibility of Franki having a permanent disability, and that Franki\n would be referred to get genetic testing and have an MRI after his cranial springs were due for removal. Nothing could have prepared us for that\n news…

\n

In January this year, at 8.5 months of age, Franki underwent his fourth round of surgery to remove the springs inserted during his spring assisted craniofacial surgery. 8\n weeks post surgery we were told that his Craniosynostosis treatment had been successful. We had hoped that by removing his springs, somehow his\n irritability may also cease. We were wrong.

\n

Just before Easter this year, Franki was admitted again for irritability, 24 hours without sleep, and growing concern about the reason for his GDD.\n It was here that we met the most lovely general pediatrician who listened to us and shared in our concerns. The ball started rolling and our one\n week stay at PMH allowed Franki to undergo his much awaited MRI, EEG and discussion with the Nuero team doctors. Finally, we felt like we were\n getting somewhere!

\n

Franki is now 13.5 months old, and is still genetically undiagnosed, despite ongoing genetic testing, inconspicuous MRI’s, CAT scans and inconclusive\n EEG’s. After failing to be picked up by the Early Intervention Program at PMH until just recently, Franki now receives therapy services from Wizetherapy,\n as part of his WA NDIS plan which includes combined weekly physiotherapy and occupational therapy as well as occasional speech therapy. Next term\n Franki will hopefully start hydrotherapy at PMH and it is my hope that he also attends private sessions of conductive education in the not so distant\n future.

\n

Franki is now recognized as having considerable special needs. He has been diagnosed formally with global developmental delay, Cerebral Vision Impairment,\n and mild dystonia which is still under ongoing review for possible CP. Geneticists strongly believe all of these things are large in part due to\n a rare genetic disorder that is yet to be discovered. For now, they refer it to as a syndrome without a name (SWAN). Currently, Franki is non-verbal,\n can’t push off his hands, sit, stand, or walk. He can roll over from side to side, but takes an immense amount of effort in which to do so. He\n is making remarkable improvements towards sitting unassisted and we are hopeful that he will be doing so very soon!

\n

Whilst we are thankful that Franki is receiving some assistance from WA NDIS, it is unfortunately limited and only covers what is deemed as ‘reasonable\n and necessary’, which is just over 50 hours of 1:1 contact per year which equates to about once a week. We know that the early years are the most\n formative and as such, we are hoping to be accepted for intense therapy in late 2017 and early – mid 2018 with NAPA http://www.napacenter.org,\n completing 3 hours of therapy, 5 days a week for 3 weeks, totalling 45 hours will cost just under $10,000! As Franki’s parents, we are his strongest\n advocates and strongly believe that he is capable of so much given the right opportunities in life!

\n

If you would like to join our team dubbed ‘Franki’s fighter’s’, please get in touch at frankijulesmoura@gmail.com\n

\n

No matter the size of the donation $5, $50, $500 it all counts and will go a long way to giving Franki the best opportunities in life. Donations of\n any amount are so very much appreciated with all funds going directly towards progressing his development and accessing any specialised equipment\n that he may require.

\n

From the very bottom of our hearts we thank you on behalf of Franki for all your love and support. It means everything to us all.

\n

xxx

\n

Vera & Fernando

\n

 

\n

\n
", "itemId": 6743781, "name": "Franki Jules Moura", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/franki-jules-moura", "url": "/personal-fundraising-members/franki-jules-moura", "releaseDate": "2017-07-10T00:00:00", "releaseDate_raw": "2017-07-10T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-07-10T13:55:26.94", "lastUpdateDate_raw": "2017-07-10T13:55:26.94", "counter": 12, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/franki-jules-moura?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6743781&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401343", "Location": "Western Australia", "Image": "/images/personal-fundraising-images/IMG_9575.jpeg", "TEMP - Old URL": "" }, { "description": "

Georgia is a 12-year-old smiling, shining star!\n
\n

\n
She is a delightful, engaged, funny, determined, bright little lady with a head full of crazy curls. Georgia also has severe Cerebral Palsy, which means\n she is unable to walk, talk, stand, sit, eat, wash, sleep, play, or even go to the bathroom independently. She requires 24 hour / 7 days a week assistance,\n care, and support for all tasks, 365 days of the year.\n
\n
Georgia had an extremely traumatic birth.
\n
She arrived silent and blue, and had to be immediately resuscitated and spent her first month in the NICU. Her Apgar score was 1 out of 10. Georgia had\n suffered a huge hypoxic injury (lack of oxygen) that had done extensive and irreversible damage to her otherwise healthy brain, and at just 7 days\n old she was given the diagnosis of Cerebral Palsy Spastic Dystonic Quadriplegia Grade 5. This is the severest grade of cerebral palsy. Had her birth\n not been so terrible, Georgia would be a typical 12 year old today.\n
\n
This is every parent’s worst-case scenario.  Our world imploded, and her tough journey began.\n
\n
Georgia has come a long way since her birth. She literally fought back from the dead, and has gallantly and gracefully fought ever since. Over the\n past decade, this little trooper has literally spent some 7000+ hours of her life doing formal therapy. You can more than double that number when including\n the home therapy programs conducted by her family and dedicated carers.
\n

\n
Georgia is now in Year 6 in a mainstream classroom at school, just one of her many achievements that is well beyond all expectations. She is a happy\n student and model success story of inclusive education. As well as school, she juggles Physiotherapy, Occupational Therapy, Speech Therapy, Conductive\n Education, Hydrotherapy, and Chiropractic therapy sessions each week. Every school holidays Georgia spends another 60-70 hours at the NAPA Centre,\n a world leader of paediatric rehabilitation therapy, doing their specialised Intensive therapy programs. And then there are the regular hospital check-ups\n and medical appointments… All of these therapies assist Georgia to develop skills, and to manage her pain level. Because of her therapy intervention,\n Georgia is very healthy and strong.\n

\n
In late 2018, Georgia underwent a large operation, and had a Baclofen Pump placed. The pump delivers a permanent medication stream directly into her spine,\n easing her dystonia, calming movements, and reducing her pain. It has taken about 6 months to settle in, but we are now seeing its benefits. Georgia\n is back into intensive therapy now to rebuild her strength and function.\n
\n
\n
Every formal therapy session over the 12 years has averaged between $150 - $190 or more per session. Her equipment costs are astronomical ($17,500 for\n her manual wheelchair, $8,000 for a stander, $8,000 for a walking frame, $1,500 for a basic communication device, $5,000 for a hoist, $350 for special\n supportive shoes, just as examples). You do the maths! Disability comes with an enormous price tag sadly. NDIS does help her thankfully, but there\n are huge gaps in funding and support.\n
\n
\n
Georgia’s still has a major goal of communication. She is slowly and surely learning the use of her communication system, accessing technology and speech\n programs through her iPad and head switches. Through this she will ultimately be able to tell the world what she really wants, feels, knows, understands,\n and is interested in. She will be able to ask questions. She will be able to really learn, and ultimately be a contributing member of her community.\n Most importantly, she will be able to communicate with her friends, family, and community.\n
\n
\n
Your support will help Georgia make a difference to the world.

\n
\n
Georgia has achieved more than any medical expert had ever anticipated or predicted, and this inspirational little girl has broken the barriers of common\n expectation of a child with Grade 5 cerebral palsy. We know she will continue to do this.
\n
Georgia is seeking, and needing, your generous support to continue on her positive journey, continue to grow, continue to learn, and to continue to challenge\n society’s expectations of children with Cerebral Palsy.\n
\n
\n
Your generous support will be utilised for Georgia’s many therapies, which will continue to enable her to make breakthroughs beyond expectation; Georgia's\n 24 / 7 care and respite needs, and for any specialised equipment, assistive technology, home modifications, or medical requirements which will support\n and enable both Georgia's care and capacity building.\n
\n
\n
Georgia has developed such a strength, resilience, calmness and happiness. She is wiser than most of us will ever be. She is infinitely more patient. She\n brings a warmth and gentleness to the world. Her smile and laugh is incredibly genuine and powerful. She can light up a room and she makes friends\n wherever she goes. Georgia is acutely observant and aware of her world and everyone in it. She makes her choices. She loves music, movies, swimming,\n playgrounds, being out in the sunshine, chocolate, and spaghetti bolognaise, and has a wicked sense of humour. She is an awesome big sister. She is\n a much-loved member of her classroom and whole school community. She is a delightful friend to many. She is her family’s shining light.\n
\n
\n
Georgia has helped everyone she meets see the world through very different eyes. She tests the system and she is breaking down barriers. She brings awareness\n to the world that it is not an equal place, but inclusion is the only way forward. Georgia is, and will continue to, make a difference in the world.\n
\n
\n
12 years is a long time, and the next decade will be crucial for Georgia to continue to grow and advance.\n
THANK YOU FOR being part of her amazing cheer squad.\n
\n
\n
The Conn Family truly thanks you for your support for Georgia.\n
GoGeorgiaGo!!!!
\n
\n

 

\n

 

\n
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\n

Our son Jett was born in September 2009. He was a very quiet baby and slept a lot. We thought we were blessed with the ‘perfect’ child but from around\n 4 months we were concerned as he didn’t smile, babble or give us any eye contact. We continued on, but grew further concerned as Jett was not reaching\n ‘normal’ milestones. His muscle tone was so low that he was floppy and needed to be supported up until age 1. Jett never smiled, laughed or responded\n to his name. He was also suffering from constant ear infections and had his first grommet surgery at 14 months old.

\n

We took Jett to the specialist and were advised he was just a typical boy and a little bit slower but as time went on we knew in our hearts that he\n was different. Jett would bite himself and others. He would scream and arch his back in frustration. He didn’t like loud noises or vibrations.\n He didn’t seem to feel heat or pain like I did. He constantly drooled and didn’t speak. We started occupational, physio, music and speech therapy\n when he was 15 months old.

\n

Fast forward a couple of years and Jett has been diagnosed with ASD (Autism Spectrum Disorder) He has improved so much from all of the hard work we\n have put in by doing daily therapy with Jett at home and with professionals. At 3 and a half, Jett has finally started to use words, he is walking\n and he uses eye contact and to top it off he smiles!

\n

He still has quite a long way to go. He has been assessed as being half his age mentally. Jett has been having seizures which we are currently investigating\n through EEG’s and a neurologist. He still uses nappies and can’t feed himself with utensils, But with the early intervention program we have set\n up our goal is to prepare him to start a mainstream primary school in 2015.

\n

Jett has a sensory processing disorder, PICA, global developmental delay, Seizures, Constant ear infections, anxiety, speech problems and behavior\n issues. We are fortunate enough to have Jett enrolled at AEIOU (Autism Early Intervention Outcome Unit) All funds raised will cover Jett’s fees,\n which are $47,000 per year before government and centre and leaves us $27,000 out of pocket

\n

We hope to raise money to put towards his occupational therapy and speech therapy as they are our main concern at this stage.

\n

You can follow Jett’s Journey on his facebook page https://www.facebook.com/#!/JettiSpaghetti \n

\n

We can see that Jett will reach his goals if he continues to get the support he needs. So if anyone can put some money towards Jetts therapy funding\n we would appreciate it immensely with sugar and cherries on top!!! Thank you.

\n

Love Julia, Daniel, Sienna and Jett xxxx

\n

", "itemId": 6401365, "name": "Jett Nixon", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/jett-nixon", "url": "/personal-fundraising-members/jett-nixon", "releaseDate": "2016-09-22T00:00:00", "releaseDate_raw": "2016-09-22T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-14T14:12:41.08", "lastUpdateDate_raw": "2017-02-14T14:12:41.08", "counter": 14, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/jett-nixon?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401365&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401335", "Location": "Gold Coast", "Image": "/images/personal-fundraising-images/Jett photo feb15.jpg", "TEMP - Old URL": "" }, { "description": "

\n

Joshua Elliot Mitchell, known to everyone as Joshy. Joshy, 16, has multiple disabilities - Down syndrome, Autism, Hearing impairment needing hearing\n conductors, Vision impairment requiring glasses, Congenital Heart Disease, Degenerative Lung Disease and Pulmonary Hypertension meaning he needs\n extra oxygen supplies, and Hirschsprung's Disease, he has an Ileostomy. He has Epilepsy (Atonic seizures). He struggles with immense pain in his\n neck with Kyphosis and Atlantal Axial Instability He has Obstructive Sleep Apnoea, requiring him to wear a VPAP machine to sleep. He has a lot\n of trouble swallowing, and stopped eating due to pain, so he has a PEG through which he is primarily fed. He struggles every day with immense pain\n due to a Septic infection that almost killed him in 2014.

\n

The damage to Joshy's internal organs is so extensive, it cannot be fixed. His organs are slowly deteriorating. Every time he gets sick, it is life\n threatening.

\n

Joshy was born 7 weeks premature. He spends a lot of time in hospital and has had many operations, the first one being when he was just 3 days old.\n He has had 54 operations. From his very first ultrasound they never expected him to survive another 2 weeks, let alone to be born, and then live!

\n

He has a spirit determined to live and to see the beauty in every day. Joshy is a generous, genuine, loving, caring boy. He is open and honest and\n welcoming to each and every person he meets.

\n

He has been homeschooled, can read and add up. He loves to go horse riding and spend time with his pets. He loves motorbikes. He loves going to Church\n and serving as an altar boy. His most favourite thing to do is to see bands perform live.

\n

Since an infant we have run courses in schools, businesses, churches, and hospitals, teaching them about disabilities, with Joshy being instrumental\n in the classes and practicals. We have run program's giving work experience to senior students for years with Joshy helping them learn how to understand\n disabilities. He helped in the Playgroup we ran for 10 years. He has been involved in teaching doctors about disabilities for 16 years. Joshy has\n been on the floats in the parade every year, started the Disability Action Week poker run every year, contributed art in local exhibitions (winning\n awards), been in a documentary about living with disabilities, featured in many ad campaigns and calendars for awareness raising for disabilities,\n Ronald McDonald charities and the Australian Koala Foundation.

\n

When out raising awareness, he is right beside me, shaking hands, introducing himself and promoting our cause. He has completed the ms readathon 10\n years in a row. He has volunteered with me at the local institution for the last 12 years supporting adults with disabilities. He cares for he\n the injured wildlife we rescue. He brothers the foster children we support. He is a hardworking roadie at all our concerts we organise for charity.

\n

Through the way he lives his life, and shares it with me, you and the rest of the world, he is breaking down barriers and stereotypes everywhere he\n goes. He is instrumental in our advocacy work. He has been the inspiration behind articles I have written in a number of disability and other magazines\n and many of the projects I do.

\n

Although he spends a lot of time in hospital or being bed ridden, when he is well enough, he is out there, being a part of the community and sharing\n his love and life.

\n

Thank you joining us along this journey xx\n
\n

\n

\n
", "itemId": 6401368, "name": "Joshua Mitchell", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/joshua-mitchell", "url": "/personal-fundraising-members/joshua-mitchell", "releaseDate": "2016-09-22T00:00:00", "releaseDate_raw": "2016-09-22T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-21T12:29:55.377", "lastUpdateDate_raw": "2017-02-21T12:29:55.377", "counter": 15, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/joshua-mitchell?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401368&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401340", "Location": "Toowoomba", "Image": "/josh mirchell (1).jpg", "TEMP - Old URL": "" }, { "description": "

JUMP FOR JUDE

\n

When a doctor said to Cam that his younger brother ‘doesn’t walk’, Cam quickly put the doctor in her place. ‘Jude does walk,’ he said. ‘He walks with a\n walker.’ And yes… Of course, he talks. He talks with a PODD** book.

\n

Jude, 10, also wrestles, parties at the pool, laughs at crazy jokes, plays tag, lives his super heroes & wrestling passions. He hangs out with his\n mates, reads like a champion and loves maths. Jude was born healthy and growing beautifully. But at nine months old, a viral illness set his life on\n a radically changed course, affecting his ability to move.

\n

Enabling Jude’s independence is expensive. He will always need one-on-one support, custom equipment, future home and vehicle modifications along with many\n therapies and ongoing medical needs. With these, he truly flourishes and will continue too.

\n

Whatever comes Jude’s way, he lives the family motto – ‘I tough’ – always having the courage to keep going. You can help him do this by JUMPING IN as guests\n of Alex and Michael with a donation in lieu of a wedding gift.

\n

THANK YOU

\n

* All donations are TAX DEDUCTIBLE\n

\n

**Pragmatic Organisation Dynamic Display

\n
\n

 

", "itemId": 7602566, "name": "Jude Tregaskis", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/jude-tregaskis", "url": "/personal-fundraising-members/jude-tregaskis", "releaseDate": "2018-06-07T00:00:00", "releaseDate_raw": "2018-06-07T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2018-08-20T13:57:44.007", "lastUpdateDate_raw": "2018-08-20T13:57:44.007", "counter": 16, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/jude-tregaskis?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=7602566&A=Delete", "deleteParams": "", "delete": "", "Location_id": "7602549", "Location": "Elwood, Victoria", "Image": "/Images/personal-fundraising-images/Jude fundraising photo.JPG", "TEMP - Old URL": "" }, { "description": "

Please dig deep for Kezzia's welfare!

\n

Kezzia Taylor, mother of three, is battling a rare and disabling neurological condition that has left her unable to speak. Kezzia is well known in the\n Noosa community, working with USM Events, Noosa Springs Golf Course and Noosa Mining Conference as an event manager before her health was hit hard\n by a debilitating condition similar to Parkinson's disease. 

\n

At first her illness was thought to be related to the stress of looking after her young son Tiger, who suffered with trachea oesophageal fistula. Tiger\n was unable to swallow as his oesophagus was not connected to stomach, but his life was saved by surgery to allow him to breathe via a tube entering\n into his windpipe.

\n

We are asking the community to come together and help raise funds to assist Kezzia and her family. Funds raised will go towards Kezzia' s ongoing medical\n needs and therapies to help support her while also relieving some of the financial pressure. 

\n

Your support and generosity is so greatly appreciated by Kezzia and her family and will make a big difference during this difficult time. 

\n

Thank you.

", "itemId": 7901589, "name": "Kezzia Taylor", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/kezzia-taylor", "url": "/personal-fundraising-members/kezzia-taylor", "releaseDate": "2018-08-20T00:00:00", "releaseDate_raw": "2018-08-20T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2018-08-20T12:06:46.583", "lastUpdateDate_raw": "2018-08-20T12:06:46.583", "counter": 17, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/kezzia-taylor?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=7901589&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401338", "Location": "Sunshine Coast", "Image": "/Fundraising Image Kezzia.jpg", "TEMP - Old URL": "" }, { "description": "

Lara was born on the 5th of November 2008. The fourth child of Mark and Madonna. She was different to her siblings. She looked different…she had\n twisted feet….she didn’t cry like the other babies. She didn’t move like them either. However, after a week in the nicu we were released to\n go home, with a paediatrician’s words ringing in our heads “She may or may not be normal, depending of if she does or does not reach developmental\n milestones.”

\n

Lara was our unexpected blessing. There was only 20 months between her and Alexandra. So you can imagine life was busy! We had just moved to Brisbane,\n Katelin was in grade one…Tom was at Kindy and then there was a toddler and a baby at home. I knew that something wasn’t right…but…what\n Mother (or Father) want to think that their child is anything but perfect? We struggled on with a child that didn’t eat well. Didn’t sleep well. Wasn’t\n like any newborn we’d had before.

\n

At 6 weeks we were re-admitted to hospital for “failure to thrive”. Lara had lost weight and wasn’t feeding well. This started the game I affectionately\n refer to as “ologist bingo”. We saw many specialists for her issues….and yet none could give us any answers. The MRI showed a normal (but small)\n brain. The genetic testing showed no trans-locations or deletions. Finally at around five months we were given the diagnosis of Cerebral Palsy. Lara\n also has microcephaly, epilepsy and vision impairment.

\n

This year sees us trying to raise much needed funds to help support Lara's everyday needs. Money raised on this fundraising page will help ease the financial\n pressure of  specialised equipment, home modifications, ongoing therapies and any other costs for Lara which come up. We appreciate your help\n in getting us there. x.

\n

 

", "itemId": 6401370, "name": "Lara Dunn", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/lara-dunn", "url": "/personal-fundraising-members/lara-dunn", "releaseDate": "2016-09-22T00:00:00", "releaseDate_raw": "2016-09-22T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-02-14T14:21:51.367", "lastUpdateDate_raw": "2017-02-14T14:21:51.367", "counter": 18, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/lara-dunn?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401370&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401333", "Location": "Brisbane", "Image": "/images/personal-fundraising-images/Lara1.jpg", "TEMP - Old URL": "" }, { "description": "

\n

Two days before Christmas in 2015, twins Pearl and Louie Hayward were born amongst tinsel and fruit mince pies and celebration. The perfect, tiny babies\n were 2 kg each and healthy and strong. They were the first children to James and Andrea, life was good!

\n

However at just 10 days old, Pearl and Louie both contracted a nasty virus and stopped breathing, they had to be resuscitated and were placed side\n by side in ICU. Their swollen bodies were reliant on life support machines and medications. After a few days Pearl started to show signs of improvement,\n however Louie did not. The virus was cruel, and had infected his brain and every organ in his body. He was given only 12 hours to live.

\n

Louie is a battler and he made it through those 12 harrowing hours, however his brain was severely injured. The vision part of the brain was badly\n affected, and Louie is now blind. The motor movement part of the brain was also severely affected, and Louie cannot yet sit, roll or crawl. This\n also affects the development of eating and drinking skills, and Louie is now fed through a tube in his stomach. The injury to his brain has also\n caused epilepsy and microcephaly, meaning ‘small head’ as it is brain growth that causes a babies head to expand as they get older.

\n

Louie’s needs are great, but his God is greater. He is a blessing to everyone who meets him- he gives A+ cuddles and loves reading braille books, listening\n to music and a good tickle fest. He loves swimming at the beach, playing on swings and slippery slides, patting dogs and has a most infectious\n giggle!! Pearl is now reaching normal milestones and is (mostly) a caring and kind sister.

\n

Louie requires intensive therapies to develop his skills- this means many sessions of physio, occupational therapy, speech/ communication and feeding\n therapies each week. At an average cost of $170 per session, the family have long since run out of funding provided by the government and are now\n self funding Louie’s needs. Each new term of therapy brings new decisions about how to prioritise resources for Louie. He benefits from all of\n the therapy he receives, and yet the family have to decide which can be budgeted for and which will have to miss out. Upcoming expenses for Louie\n include a junior wheelchair, a walker and hand splints. This fundraising page has been set up to help ease the financial pressure and assist the\n family to cover all of these costs which Louie requires.

\n

Your kindness and support means the world to Louie and his family and they are beyond grateful for your generosity in helping Louie receive the therapy\n and equipment he needs to reach his full potential. Thank you!

\n

", "itemId": 6744608, "name": "Louie Hayward", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/louie-hayward", "url": "/personal-fundraising-members/louie-hayward", "releaseDate": "2017-07-11T00:00:00", "releaseDate_raw": "2017-07-11T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-10-11T11:31:10.26", "lastUpdateDate_raw": "2017-10-11T11:31:10.26", "counter": 19, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/louie-hayward?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6744608&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401335", "Location": "Gold Coast", "Image": "/images/personal-fundraising-images/Louie Hayward.jpg", "TEMP - Old URL": "" }, { "description": "

Marayke Jonkers, 36, is a retired Paralympic medal winning swimmer, paratriathlete and founder of Sporting Dreams, a grants program which helps athletes\n with disabilities. Unfortunately after 20 years as an elite athlete Marayke has been diagnosed with an overuse injury to her arms and now not only\n lives in extreme pain but requires a modified van to drive while still in her motorised wheelchair, as she is unable to propel a manual wheelchair\n and transport it in her current vehicle.

\n

Imagine going from being so strong you can lift your body weight with one hand to being so weak you drop a piece of toast, and not only that being forced\n to stay at home because you cannot afford a suitable mode of transportation.

\n

Imagine if every time you went to work you became bedridden in agony for up to a month because you had to use inappropriate transport – this is a reality\n for Marayke now as when she travels to every motivational speaking job she is required to go in a car or maxi taxi and causes her extreme discomfort.

\n

Yet Marayke remains motivated to continue working and contributing to the community. She has overcome so many obstacles through the thoracic outlet syndrome\n including an inability to type or use the mouse by now using voice dictation to control her computer so that she can continue her role as a motivational\n speaker, sharing her journey to becoming a Paralympian in the hope it inspires others to chase their dreams.

\n

Your support and kind donations are greatly appreciated and will make a huge difference in Marayke’s life and what she can continue to achieve. Thank You!

\n

To read Marayke’s story further please view here.

\n

 

", "itemId": 6401371, "name": "Marayke Jonkers", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/marayke-jonkers", "url": "/personal-fundraising-members/marayke-jonkers", "releaseDate": "2016-09-22T00:00:00", "releaseDate_raw": "2016-09-22T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2018-06-27T13:52:52.12", "lastUpdateDate_raw": "2018-06-27T13:52:52.12", "counter": 20, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/marayke-jonkers?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401371&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401338", "Location": "Sunshine Coast", "Image": "/Marayke JJ.jpg", "TEMP - Old URL": "" }, { "description": "

FOREVER MOVING WHEELS 

\n

Hi, let me introduce myself. I’m McKenzie but you can call me Kenz. That seems to be what everyone calls me.

\n

I have a rare movement disorder that causes my body involuntary movement. Its like being trapped in a body with no control of it. Its so rare that it doesn’t\n have a fancy name yet. Its just labelled as GNA01. This is the area that has the mutation. When I was diagnosed in 2015 I was number 7 in the world\n and now our little community has grown to 100 members worldwide.

\n

My condition impacts my daily life in every aspect of it. I’ve spent my entire life moving. Because of my movement I am unable to walk, sit, or doing anything\n unassisted. I am non-verbal (although my expressions speak louder than words) I’m even battery operated. YEP! I even need to be charged 3 times a week.\n “That’s something not many can say!”

\n

4 years ago life took a huge turn for me and I needed major brain surgery known as Deep Brain Stimulation (DBS). This saved my life and keeps me out of\n ICU. Last year I had a few issues and spent 3 months in hospital with 6 weeks of that in ICU as I developed an infection so needed brain surgery to\n have my DBS taken out while the infection cleared. In August 2018, I had the DBS put back in. My life without DBS would look very different to today.\n

\n

Despite living trapped in my body that has a mind of its own, I’m HAPPY even though I suffer from pain, I still LAUGH even though my body is thrashing\n around. And I always SMILE even on my worst days. I fight hard everyday to live the best life I can.

\n

I live on the Gold Coast with my mum and she provides all my care 24/7. Things are pretty tough for us because mum is unable to work and is not eligible\n for financial assistance here so relies on support of our community and organisations to keep us afloat.

\n

I am rather tall and am very close to the roof of our van. It’s become very unsafe for mum to put me in the van as I am too tall for the entranceway and\n when in my chair my feet are touching mums elbows when she drives. 

\n

So mum is on mission to raise funds for a much-needed van that is suitable for me and my growth. This will be a van that will see me right through to adulthood.\n Without transport I am unable to get to school, my hospital appointments, therapies, and just living daily life.

\n

We are reaching out and asking for your help to purchase my “FOREVER MOVING WHEELS”

\n

Any donation even $2 is tax deductable which is great with the end of financial year fast approaching. You can claim it back all while helping mum get\n the perfect practical wheels for me.

\n

Thank You in advance for the support. Whether you donate or just share with family and friends it all counts.

\n

Kenz \n
\n

\n

 

", "itemId": 6401372, "name": "McKenzie Tamala", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/mckenzie-tamala", "url": "/personal-fundraising-members/mckenzie-tamala", "releaseDate": "2016-09-22T00:00:00", "releaseDate_raw": "2016-09-22T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2019-03-04T12:03:44.463", "lastUpdateDate_raw": "2019-03-04T12:03:44.463", "counter": 21, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/mckenzie-tamala?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401372&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401335", "Location": "Gold Coast", "Image": "/images/personal-fundraising-images/pic 18.8.15.PNG", "TEMP - Old URL": "" }, { "description": "

Myra is a 10-year-old girl who lives with her family, her father Karel, sister Jenae (11), brother Saxon (8) and soon, Cheryl (Karel’s partner) will join\n them in Brisbane.

\n
The children’s Mother, Amy, passed away in a car accident on the 4th of April 2019.
\n
 
\n
Myra is currently under support services in Western Australia and is registered with the WA Department of Communities, Disability Services due to a diagnosis\n of Miller Deiker Syndrome which is a genetic condition characterised by a specific brain malformation (Lissencephally).
\n
 
\n
As a result Myra lives with a range of disorders including (but not limited to) epilepsy, cerebral palsy, global developmental delay, epiglottical dysfunction,\n cortical vision impairment, muscular atrophy and thermal regularity disorder. Myra’s intellectual capacity is around that of a 3 month old child. Myra\n requires full support with all aspects of personal care, daily living and community access.
\n
 
\n
Karel is in the RAAF and will be moving to Brisbane before the 8th of July 2019 from Perth.
\n
 
\n
The children will experience their first ever move to another capital city and the change in family circumstances will mean increasing the demands on the\n family. Not only to ensure Jenae and Saxon receive all the support from moving interstate, but also to meet Myra’s needs and establishing a new support\n and medical network for Myra.
\n
 
\n
Cheryl, who is also in the RAAF, and the children will also have their own challenges of living with each other as a ‘blended family’. The family has no\n family support network in Brisbane as they are all interstate. This means the family will have to attend to the family’s needs alone and must find\n additional support. Myra is currently going through an application with NDIS.
\n
 
\n
Myra is PEG fed for all meals and these can take over 2.5 hours for one meal. During this time Myra needs to be supervised and suctioned regularly to avoid\n aspiration due to her epiglottical dysfunction. Myra has frequent chest infections due to aspiration and has also had her parotid glands tied off and\n her submandibular glands removed to control the infections.
\n
\n
\n
\n
The family home will need to be modified to enable Myra’s shower commode to be used in the bathroom. In the meantime, Myra is being lifted from her wheelchair\n to the shower chair. This is unsustainable as Myra weighs over 30kg and the parents are at risk of injury.
\n
\n
\n
\n
Myra has no communication skills. She enjoys the closeness of her family and being held. Myra enjoys the freedom of being out of her chair and usually\n spends this time in the recovery position, occasionally rolling over on her mat on the floor. Myra’s vision is limited and can only see in contrasting\n shades such as black and white. Myra can, however identify and track something close by. Myra has almost no use of her limbs due to the cerebral palsy.
\n
\n
\n
\n
Myra has regular seizures and is mildly controlled by medication. Sometimes they are treatable via heavy sedation, other times it is literally days of\n sleepless nights of crying and screaming which requires constant sedation to control.  
\n
Myra is unable to regulate her own body temperature thermo-regularity disorder Myra is receiving therapy through Therapy Focus and this has been taking\n place at the school. In particular, Myra’s main concern is her hips and she cannot stand without a standing frame. Her inability to stand from an early\n age has put her at risk of hip dislocations which is being monitored by medical specialists. Unfortunately, this is deteriorating and will require\n surgery in the near future.
\n
 
\n
Myra is mobilized using an attendant wheelchair which includes a restraint to support her neck and enable her to maintain control of her head. The chair\n is heavy and complicated and requires to be transported via wheelchair taxi or wheelchair vehicle, which the family does not currently have. We are\n urgently trying to raise funds at the moment to purchase a suitable vehicle to be modified for the wheelchair, to enable Myra to attend appointments\n as well as enabling her to attend family outings.
\n
\n
\n
\n
If you have any questions about Myra and her needs, please contact me anytime on 0428 348 701.
\n
\n
\n
\n
Kind Regards,
\n
Karel
", "itemId": 8462819, "name": "Myra Sykora", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/myra", "url": "/personal-fundraising-members/myra", "releaseDate": "2019-06-14T00:00:00", "releaseDate_raw": "2019-06-14T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2019-06-14T13:32:49.097", "lastUpdateDate_raw": "2019-06-14T13:32:49.097", "counter": 22, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/myra?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=8462819&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401333", "Location": "Brisbane", "Image": "/Images/personal-fundraising-images/MYRA SYKORA 1.jpeg", "TEMP - Old URL": "" }, { "description": "

Hi, my name is Nolan and I’m a happy 6-year-old boy from Townsville. I was born 3.5 months premature. My brain suffered from oxygen starvation, which resulted\n in a long-term diagnosis of spastic quadriplegic cerebral palsy.

\n

To give me the best chance of an independent life, my parents have engaged me in regular therapy since I’ve been 1 year old. Because of that I have come\n a long way. My biggest achievements so far are that I’m able to talk, eat and drink whatever I want with help, roll over and sit myself up for a couple\n of minutes. I also just received my first electric wheelchair and I’m learning how to drive it.

\n

In October last year I underwent a stem cell transfer to hopefully fill the gaps in my brain that occurred after I suffered from oxygen starvation.

\n

Now my parents are trying to fly me to Cyprus to do a 4-week Ozone therapy in combination with specialised UV and Magnetic therapy plus daily personal\n training to stimulate my oxygen metabolism and build new pathways in my brain. For that reason, my parents and friends are currently trying to raise\n $15,000.00.

\n

Even though both my parents are working it is nearly impossible for us to save up the cost for all my treatments and that’s why we are asking for your\n help to raise the funds.

\n

YOUR DONATION will make more of a difference than you could possibly imagine and our gratitude has no end. \n

\n

To follow my progress and/or to contact me and my family please like my personal Facebook page: https://www.facebook.com/nolanwillwalk  \n

\n

Thank you!

\n
\n

 

", "itemId": 6401373, "name": "Nolan Rooms", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/nolan-rooms", "url": "/personal-fundraising-members/nolan-rooms", "releaseDate": "2016-08-30T00:00:00", "releaseDate_raw": "2016-08-30T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2018-09-06T10:08:27.44", "lastUpdateDate_raw": "2018-09-06T10:08:27.44", "counter": 23, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/nolan-rooms?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401373&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401341", "Location": "Townsville", "Image": "/images/personal-fundraising-images/Nolan Fundraising Photo.png", "TEMP - Old URL": "" }, { "description": "

\n

Our Backyard is a 5 acre learning ,education and recreational facility in the Noosa Countryside that provides life skills, recreation and learning\n opportunities to young people of all ages and abilities.

\n

Located at 468 McKinnon Drive Cooroibah and 5 minutes from Tewantin/Noosa, Our Backyard brings everyone together in one accessible place to deliver\n all of our programs and services.

\n

Our Backyard is a Hobby Farm which is home to numerous farm animals that include; Cows, Goats, Sheep, Donkey, Ducks, Chickens, Geese, Guinea Fowls,\n Peacock and a Miniature Horse, who all share the paddock and stable yards. These farm animals have made Our Backyard their home and help us deliver\n animal therapy and animal care programs to individuals living with disability.

\n

Our Backyard is located in a beautiful Australian bush setting with plenty of garden beds filled with herbs, salad, veggies, a variety of fruit trees,\n and an assortment of native shrubs and trees which we all care for.

\n

Our Backyard has plenty of facilities for everyone to enjoy, including, Our Backyard Outdoor Learning Kitchen, A Learning and Recreation Centre, an\n Adventure Playground, an Accessible Tree House, An Early Intervention Facility, A Respite House, An Accessible Pool and beautifully landscaped\n gardens and dams. Plans for the future include a kitchen / cafe called “The Farm Pantry\" that will offer employment opportunities for our disabled\n members and provide a peaceful environment for the community to enjoy. Our Backyard will also be a place for kids to enjoy farm themed birthday\n parties and will also be available to school groups to experience Farm Culture.

\n

Making a donation towards Our Backyard assists us with maintaining the beautiful bush setting so our members living with disability can enjoy and be\n supported in a safe and education environment. 

\n

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Ruby has had a tough start to life, born prematurely at 27 weeks and contracting Strep B Meningitis at just 31 weeks left her with brain damage. Regardless\n of all her trials Ruby is a determined, strong and happy girl, a credit to her parents and a joy to those she interacts with.

\n

After her rough start to life Ruby has come a long way; she is now a boisterous 8 year old who doesn’t let her cerebral palsy hold her back! Ruby has great\n spirit and love for life; she enjoys ballet, books, playing with sand, using her walker and is an absolute joy to meet and spend time with!

\n

Ruby’s diary has always been full of a variety of appointments; physio, occupational therapy, conductive education, horse riding, feldenkrais, hip surveillance,\n speech therapy and the list goes on! The early years are the most formative and she is ambitious to achieve her full potential.

\n

Contributions for Ruby will go towards an Intensive Therapy Program run by The Neurological and Physical Abilitation Centre (NAPA) which has an incredible\n success rate. The cost of the program is $10,120 which goes for 3 weeks, 4 hours of intensive therapy each day. This will give Ruby the opportunity\n to focus on select therapies that will suit her, such as; NeuroSuit, Cuevas Medak Exercise, Oxygen Therapy, Physical Therapy, etc. It is beneficial\n for Ruby to gain access to the program in her early years as this will give her a good foundation for an independent environment.

\n

Ruby’s family are hoping to raise enough funds to get her into four sessions within the next 12 months; the four sessions Ruby has already attended have\n already proved greatly beneficial. In fact they have been so beneficial that her scale of CP has been reduced from a level 4 to a level 3; this is\n extremely rare! Ruby has also managed independent steps through this therapy program!

\n

With your help, we will be able to give Ruby every opportunity to better her life. Every cent you donate will assist us in taking a step in the right direction.

\n

Thank you for your support and well wishes!

\n
\n

 

", "itemId": 6401375, "name": "Ruby Rolph", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/ruby-rolph", "url": "/personal-fundraising-members/ruby-rolph", "releaseDate": "2016-08-30T00:00:00", "releaseDate_raw": "2016-08-30T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2018-06-18T13:46:28.633", "lastUpdateDate_raw": "2018-06-18T13:46:28.633", "counter": 25, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/ruby-rolph?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6401375&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401343", "Location": "Western Australia", "Image": "/images/personal-fundraising-images/updated-photo-17.5.16.jpg", "TEMP - Old URL": "" }, { "description": "

\n

Hi My name is Bec and I am Ryan’s mum. I have set up this page to raise enough funds to purchase my 5 year old little boy an autism assistance dog.\n

\n

Ryan is such a sweet young boy but life isn’t easy for him, what he sees and hears is different to those around him. Our life is anything but normal\n and most daily tasks are a hassle such as feeding, schooling and any sort of outings like shopping or social activities.

\n

Ryan also has two sisters, Emma, 7, and Grace, 2 who just adore their brother, and would love to see him receive this puppy to help him and be there\n for him as a best friend. It will also give them the freedom to have some time and space to themselves.

\n

While it may seem like this is a lot of money to raise for a dog, I could give you multiple reasons as to why they are at such a high cost, however\n there are a few main reasons. First being that there is currently no government funding for trained assistance dogs and even NDIS funding will\n not cover the purchase or expenses of an assistance dog. So much time, resources and training goes into each assistance dog and they are all trained\n to specifically suit the individuals needs and abilities, it is quite a process and this takes hard work and time.

\n

We have set up this page to help with the financial cost of purchasing this trained autism assistance dog. Having an autism assistance dog for Ryan\n will help with his safety, as he has no concept of danger and will without worry run across a busy road, it will help him socially and also be\n a huge assistance with calming him when he has a meltdown. As a family, having an assistance dog will make our life a little easier as we can do\n more family trips, knowing that we have the assistance dog to help with any melt downs and keeping Ryan calm.

\n

Any donation big or small is appreciated by our family and will go a long way into making our dream achievable. Your support is amazing, thank you.

\n

Bec, Ryan, Emma & Grace.

\n

If you would like to follow Ryan’s journey, please follow his facebook page – www.facebook.com/1d1b1m\n

\n

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\n

Samuel’s Story!

\n

My name is Samuel Jesse Amiet and I am 7 years old. I have been diagnosed with: Cleft Palate, Gastrointestinal-Reflux, Cerebral Palsy, Epilepsy, Perthes\n Disease, DNA Repair Defect, Global Development Delay, Intellectual Disability, Anaemia, Speech and Communication Delay.

\n

This is my story: “I was born a little early in June 2009 and besides being very small everything seemed to be ok. That was until I was 3 days old,\n my Mummy and Daddy knew something just wasn’t right. After a whole day of tests, it was found that I had a Cleft of the Soft Palate. After 8 days\n in the NICU and with the help from Mum and Dad I was sent home with naso-gastric feeding tubes, specially designed Chu Chu teats and a whole bag\n of medical supplies.

\n

My absence from hospital was short; feeding issues meant I couldn’t gain weight, in turn meaning I easily got sick, and sometimes very sick. I was\n diagnosed with severe chronic reflux, I was in ALOT of pain ALL of the time. Finally on the 10th of February 2010 my Plastic Surgery team decided\n to operate to repair my palate. My cleft palate surgery went incredibly well. Due to my cleft palate I also required a set of grommets, this meant\n for the first time in my young life I could hear properly, and within days I begun making sounds, those of which a baby should begin making not\n long after their birth.

\n

On the 30th March 2010 my dad found me in the middle of a severe tonic clonic seizure. I was rushed to hospital and after a 25minute seizure spent\n two days there. It would soon become clear that it was much more, the seizures didn’t stop, ranging from 30 minutes to one hour and forty five\n minutes, over the next 2 years I would suffer in excess of 30 severe pro-longed seizures, and countless mild seizures. After a long wait I was\n finally diagnosed with Cerebral Palsy and of course Epilepsy. My life has never been the same; my time is shared between, Speech Therapy, Physio\n Therapy, Occupational Therapy, Music Therapy, Hydro Therapy and a multitude of other specialist and therapy appointments all over the Gold Coast\n and South Brisbane areas. I have been assessed and it has been determined that I have a Global Development Delay.

\n

In January 2014 I was also diagnosed with Perthes Disease. Perthes Disease has caused my legs and my ability to walk to deteriorate. I am in pain all\n of the time and now I’m not able to walk more than 40 metres without it causing excessive pain and discomfort. Due to this I am now in a Wheel\n Chair 50% of the time and restricted to very minimal, low impact exercise and very few activities. As a young boy I find this hard and very disheartening\n as I just want to be able to play with my big brother and my friends.

\n

In September 2016 after 8 months of consistent and unexplained regression in all aspects of my health I had a Naso-Gastric feeding inserted and now\n require a permanent feeding pump. In October 2016 I had a Gastrostomy PEG inserted to ensure my long term nutritional needs are looked after. January\n 2017 this was changed to a permanent Mic-Key button.

\n

Sadly the news just keeps getting worse. In December of 2016 I was diagnosed with an unrepairable DNA Repair Defect. It will takes months of DNA testing\n in the United States to determine what, if anything can be done from now on.

\n

On a high note I achieved something my family thought would never be possible. I started Prep in 2014; I am now in Year 3 and learning at my own pace.\n I love school, and socialising with my friends. I am starting to learn basic words, I wear R-Wraps on my legs and have special frames to help me\n be a little more independent using the toilet and washing my hands at home.

\n

My parents have been so good in helping me with as much as they can however sometimes they just don’t have enough for everything. The constant driving\n to appointments costs a lot of money, and so does all the extra therapies and equipment that I will continue to need. This page has been created\n to raise funds, for Speech, Physio, Occupational, Ophthalmology, Travel, Parking, Hospital and Feeding Requirements as well as Hydro Therapy Blocks,\n or any other additional therapies, resources or specialised equipment needs that I have ahead of me in my long journey to show the world just how\n strong I can be.

\n

With funds generously donated via Sunshine Butterflies you can help me thrive, and continue to show the world just how brave and determined I am. Thank\n you kindly in advance.

\n

Regards, Samuel Amiet, My Mummy, My Daddy and Big Brother Cooper

\n

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Please follow my journey through my facebook page:\n

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https://www.facebook.com/watchsamuelshine?ref=aymt_homepage_panel\n

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Or on Instagram @itssamuelsstory\n

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\n

Our son Samuel is 2 years and 4 months old.
\n
 
\n
When he was born at 39 weeks via emergency caesarean he lost all oxygen to the brain and was lifeless for 7 minutes. As a result, Samuel suffered significant\n brain damage, resulting in him being diagnosed with Spastic Dystonic Quadriplegic Cerebral Palsy level 4, epilepsy and a long list of other medical\n conditions.\n
\n
\n
\n
Specialists did not expected Samuel to live past 2 days, but he has fought extremely hard, and has come so far.  He spent a total of 5 weeks\n in the neonatal intensive care unit at Nepean Hospital.
\n
\n
\n
\n
In this time Samuel undertook many scans and specialist appointments.\n
\n
His conditions prevent the normal development of motor functions.
\n
This type of cerebral palsy often makes simple task a lot more challenging which includes walking, siting up or picking up small objects. He is also\n at risk of co existing conditions that can lead to attention deficit hyperactivity disorder (ADHD), or behavioural disorders from where the brain\n damage is located.
\n
 
\n
Unfortunately for Samuel his CP affects all four limbs, as well as his torso and face and is currently in the process of having to be fed threw a tube\n because of his diagnoses.
\n

\n
Throughout Samuel’s life, he has faced many challenges and together we have worked through countless hours of therapy to assist him in achieving\n as many milestones as he possibly can.\n
\n

\n
We have assisted Samuel physically, mentally, emotionally and financially as much as we can from day one and will continue to for the rest of our lives.\n It is sometimes the financial assistance that we have difficulty with. We appreciate the assistance we get from the NDIS, but this does not cover\n all of Samuel’s ever-increasing needs.\n
\n
Samuel has many medical appointments each week that we have transport him to. We want to ensure that Samuel remains social with our family and\n friends who bring so much happiness to his life.\n
\n
He is now starting to get too heavy to lift in and out of the car, especially due to his muscle tone.
\n
We must bend him in so many ways as he cannot control his body movements when he is stiff and upset (dystonia). We fear he is getting injured each\n time we transfer him in and out of the car.\n
\n
To be able to transfer Samuel safely without him being upset or injured, we need a modified vehicle that could accommodate his wheelchair so that\n he could remain in it whilst entering and exiting the vehicle.
\n
\n
\n
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This will become even more crucial, as Samuel grows older and heavier.\n
\n
\n
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We are trying to raise enough money to purchase the supporting travelling needs and to assist in him being independent.\n
\n
The funds will also be for any other conversions or equipment for Samuel’s needs. It would mean the world to us for our little boy Samuel to be\n independent and comfortable throughout his life.
\n
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We thank and appreciate all your support for us and Samuel.
\n
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\n

“Scarlett’s Smile”

\n

 Scarlett is a beautiful little Perth girl, with the biggest heart and most infectious smile. However, because of a very\n rare genetic disorder, she faces a number of challenges.

\n

She has something called Hypotonia, which just means she is very floppy and has low muscle tone. Scarlett was also born with a cleft palate, club foot,\n and a level of vision similar to legal blindness, as well as being at high risk of seizures. She is nearly two years old but unfortunately Scarlett\n cannot roll, sit, crawl or stand unassisted.

\n

She has been diagnosed with the GNB1 gene mutation, Global Development Delay (GDD), Cortical Vision Impairment (CVI) and sensorineural hearing loss.

\n

Scarlett receives support services from the Ability Centre and attends Carson St school but unfortunately needs much more therapy than the mainstream system\n can provide, and this comes at a great expense.

\n

She recently did her first NAPA intensive therapy program over in Sydney, and her progress was nothing short of amazing. She did 2 hours of Cuevas Medek\n Exercize every day for 3 weeks. These intensives teach new improved motor patterns through repetition, with Scarlett able to build upon skills learnt\n in previous days. Her head and trunk control improved incredibly well! We would like to register for 2 more intensive programs in 2018. However, these\n intensive therapies come at a massive cost. A 3 hour per day program would consist of 45 hours of therapy, and cost a total of $7,875.

\n

WE NEED YOUR HELP. Any donation, big or small, will make such a massive difference to Scarlett’s life. We would also appreciate if you could please share\n this page. To learn more about Scarlett and her journey, please visit her Facebook page (www.facebook.com/scarlettssmile)\n or Website (www.scarlettssmile.com)

\n

Thank you from the bottom of our hearts, Kate, Marcus and Scarlett XO

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\n

Hey! I am Shane Hicks! I am a member of Sunshine Butterflies, have been for a very long time. I really enjoy all of the programs and activities I am\n involved in at Sunshine Butterflies 'Our Backyard'. Since I joined Sunshine Butterflies I have been involved in many projects, Woodwork, Cooking,\n Music, Art, and even Drama. I have learned many new skills and made lots of new friends! 

\n

Now I want to give back, do you want to join me in supporting a good cause? I'm raising money for Sunshine Butterflies programs and activities and\n your contribution will make an impact, whether you donate a lot or a little. Anything helps. 

\n

A huge thank you for your support!

\n

Shane Hicks.

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", "itemId": 8564752, "name": "Shane Hicks", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/shane-hicks", "url": "/personal-fundraising-members/shane-hicks", "releaseDate": "2019-07-23T00:00:00", "releaseDate_raw": "2019-07-23T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2019-07-23T10:43:08.213", "lastUpdateDate_raw": "2019-07-23T10:43:08.213", "counter": 30, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/shane-hicks?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=8564752&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401338", "Location": "Sunshine Coast", "Image": "/images/personal-fundraising-images/60002579_2209062379130510_4009995846543212544_o 2.jpg", "TEMP - Old URL": "" }, { "description": "

Shonaya is a bright and bubbly 11 year old girl who loves being outdoors and out in the community. She enjoys being read stories, watching her favourite\n TV shows, music and as all young girls do shopping…

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Shonaya has an undiagnosed condition, however her presentation is very similar to Rhett Syndrome/ ‘CDKL5, this means Shonaya utilises a wheelchair every\n day to get around with a person to assist her with this.

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Shonaya experiences multiple seizures (most days) these appear to fluctuate in accordance with an apparent development of resistance over time in relation\n to medication. Shonaya is dependent on others for all aspects of care in her life.

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Shonaya weighs 26.7kg and can be quite wriggly with fluctuating tone and requires two-person hoist transfers; support to eat (spoon fed); support for all\n personal care and hygiene needs she requires a wheelchair for mobility; she is non-verbal, but her smile will just melt anyone she meets. Despite all\n of these factors Shonaya still manages heaps of smiles every day and brightens the lives of those around her.

\n

Shonaya’s hips are both out and cause discomfort with lifting, whilst we can hoist her in the home environment we can’t hoist her into the car.

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Transport has been identified as a major barrier to Shonaya being able to access the community and is something that significantly impacts upon those who\n care for her. Shonaya has a team of 8 specialists that assist in ensuring Shonaya is as healthy and comfortable as possible and a few of the specialists\n are in Brisbane at Lady Cilento Hospital, which is another reason, why we would like to see Shonaya in an accessible vehicle. Shonaya is now 26.7kg\n and will only continue to get bigger as she gets older.

\n

In saying that it has become difficult, painful and risky to transfer Shonaya into a vehicle. Having access to her own accessible vehicle would mean that\n Shonaya could remain in her wheelchair and not need to be lifted in and out in order to travel to locations which would reduce the likelihood of an\n injury to both Shonaya and Shonaya’s caregivers.

\n

Please get behind this great cause as it will all assist in reaching our end goal of being able to buy a Wheelchair Accessible Vehicle that will allow\n Shonaya and her family and Caregivers the opportunity to get Shonaya out and about in the community more and be able to transport her to her specialist\n appointments that are a vital part of Shonaya’s life. Thank you so much for your support and kindness!

\n

 

", "itemId": 6744783, "name": "Shonaya Whitehouse", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/shonaya-whitehouse", "url": "/personal-fundraising-members/shonaya-whitehouse", "releaseDate": "2017-07-11T00:00:00", "releaseDate_raw": "2017-07-11T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2017-07-11T10:47:48.403", "lastUpdateDate_raw": "2017-07-11T10:47:48.403", "counter": 31, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/shonaya-whitehouse?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=6744783&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401338", "Location": "Sunshine Coast", "Image": "/images/personal-fundraising-images/shonaya photo 4.4.17.JPG", "TEMP - Old URL": "" }, { "description": "

\n

Sunshine Butterflies is a boutique, not- for-profit provider that has built a network of flexible services to provide information, support, resources\n and programs to individuals and families living with a disability in a safe and happy learning environment.

\n

Sunshine Butterflies was founded in 2005 by Leanne Walsh, who made it her mission to reduce the stigma of disability within her community and she now\n leads a small and passionate team to help make this dream a reality.

\n

Leanne’s enthusiasm and dedication towards disability education, awareness and inclusion began together with her husband Damien when their son Curtis\n was born 13 weeks premature with Cerebral Palsy. It is from her own journey and experiences that led Leanne to develop and create a charity and\n service that specialise in supporting families and individuals, as well as educating the younger generation about disability, acceptance and inclusion.

\n

Sunshine Butterflies provide families with parent support, information and individual assistance, swim, social and recreational opportunities, early\n intervention programs, post school recreational programs, respite and personal fundraising plans.

\n

Those who use our services are families, individuals, carers, service providers, NGO’s, medical personnel, schools and community groups, all for different\n reasons.

\n

Sunshine Butterflies programs, activities and support services are for the whole family and are delivered from our new location 'Our Backyard' a 5 acre hobby farm.

\n

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Sunshine Butterflies does not receive government funding and greatly appreciates the generosity of donations to help sustain our charity and to\n continue to provide our members and their families with quality support and activities. Your support in sharing our vision, allows us to continue\n to improve the lives of individuals living with a disability. THANK YOU!

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", "itemId": 7301500, "name": "Sunshine Butterflies", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/sunshine-butterflies", "url": "/personal-fundraising-members/sunshine-butterflies", "releaseDate": "2018-02-13T00:00:00", "releaseDate_raw": "2018-02-13T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2018-02-22T10:15:09.903", "lastUpdateDate_raw": "2018-02-22T10:15:09.903", "counter": 32, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/sunshine-butterflies?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=7301500&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401338", "Location": "Sunshine Coast", "Image": "/Images/personal-fundraising-images/SB Square logo.jpg", "TEMP - Old URL": "" }, { "description": "

 

\n
Tallow is a happy, social and fun-loving 7 year old boy. \n
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He is extremely kind, sensitive and compassionate and has a large zest for life.\n
His smile is infectious and makes friends young and old, everywhere he goes.\n
\n
Tallow also has ‘Cerebral Palsy Spastic Diplegia’ which affects his legs, left arm and trunk.\n
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His arrival into this world was 10 weeks earlier than expected. Due to a lack of oxygen to his brain there is some damage to the part of the brain\n that governs motor function and this has resulted with his physical challenges.
\n
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As result of his ‘spastic diplegia’ Tallow finds it physically difficult to keep up with his brother and his friends. His affected muscles are\n constantly in a contracted state even when they aren’t working so he fatigues quickly.\n
\n
In addition to this, his balance is compromised and his muscles work against what he wants them to be doing so for him to do simple tasks\n such as walking, standing and kneeling it takes enormous effort, sometimes discomfort and lots of falls.
\n

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Tallow is getting to an age now where he is questioning why he can’t do the things that his peers can do.\n
\n

\n
Although he has a naturally positive and joyful disposition, he has moments of sadness as he sometimes can’t keep up with his friends and join in\n on the active play with his peers.
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He has done and continues to do many hours of therapy and several 3-week intensive blocks at the amazing NAPA centre in Sydney each year. But despite\n all his hard work and determination, his muscles will continue to get tighter, his joints continually deteriorate and spine constantly getting\n pulled in asymmetric alignment as he grows. The spastic muscles are causing detrimental damage to his body which cascade into a whole lot of secondary\n problems.\n
\n
This will result in Tallow needing various corrective surgery throughout his lifetime.
\n
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BUT… Tallow has recently been accepted as a candidate for surgery in the U.S called ‘Selective Dorsal Rhizotomy (SDR) which will eliminate\n all the tightness in his muscles due to his condition. The surgery is the first step and then a gruelling couple of years of intensive rehabilitation\n to train his newly exposed weak muscles that he has not been able to access previously. Not only will this will give him better balance and more\n stamina, it will greatly reduce the chance of future muscle and joint deterioration and many other secondary problems that will otherwise\n inevitably arise in the future due to his spastic muscles.\n
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We are completely aware that this is no miracle cure and that he will always have physical challenges.\n
But this is our opportunity to give him the best possible chance at an independent and pain-free future.\n
We need to raise approximately AUD $100,000 to cover the cost of the flights, medical expenses, accommodation and immediate rehabilitation\n for the month afterwards.
\n
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Your kindness and support means the world to Tallow and his family.\n
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They are so grateful and appreciate the generosity towards helping Tallow.
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", "itemId": 8639163, "name": "Tallow Ra", "urlWithHost": "http://www.allabilitytraining.com.au/personal-fundraising-members/tallow", "url": "/personal-fundraising-members/tallow", "releaseDate": "2019-09-16T00:00:00", "releaseDate_raw": "2019-09-16T00:00:00", "expiryDate": "9999-01-01T00:00:00", "expiryDate_raw": "9999-01-01T00:00:00", "lastUpdateDate": "2019-09-25T09:36:16.767", "lastUpdateDate_raw": "2019-09-25T09:36:16.767", "counter": 33, "weight": null, "commentCount": 0, "editUrl": "/personal-fundraising-members/tallow?A=Edit", "isCustomerModule": false, "editParams": "", "edit": "", "deleteUrl": "/CustomContentProcess.aspx?CCID=35707&OID=8639163&A=Delete", "deleteParams": "", "delete": "", "Location_id": "6401338", "Location": "Sunshine Coast", "Image": "/Images/personal-fundraising-images/Tallow.jpg", "TEMP - Old URL": "" }, { "description": "

Tom is a statistical miracle. He had ruptured membranes at 17 weeks and continued to grow and develop until 29 weeks, where he entered the world in a hurry.\n Tom was born at 953 grams and a mere 33 cm long. Tom was doing really well until he picked up two different infections, both of which were life threatening.\n At 32 weeks we were told we’d be taking home our son at term and at 36 weeks we were told we probably should prepare ourselves that Tom wouldn’t be\n coming home.

\n
However, in true Tom style, he took us to the brink of despair and then decided to follow his own path back to living. Tom spent 290 days in NICU at the\n Royal Women’s Hospital in Melbourne and still holds the crown for the longest stay patient. Tom came home on full-time additional oxygen and with a\n feeding tube. At this stage Tom was categorized as having severe chronic lung disease, hypertension, severe oral aversion and global developmental\n delay, all of which you can grow out of.
\n

 

\n
However our reality was about to change. With no warning or prior suggestion, Tom was diagnosed at 2 as having cerebral palsy and a sensory processing\n disorder. With this came a life long diagnosis which presented itself through motor challenges and major speech delays. Tom’s never give up attitude\n saw him take his first independent steps 4 days before his fifth birthday and soon after this he went from being a totally non-verbal child to one\n that we’d often like to say ‘Hey, would you just stop talking for awhile!” to. Tom is an amazing little boy. His internal drive to succeed is why he\n is still here today. His cheeky personality is why you can’t help but love him!
\n
There are 3 life defining moments that stand out in Tom’s journey:\n
1/ At age 2 we took him to the NoTube clinic in Graz (Austria) to get rid of his feeding tube and consequently by the time he was 3 he was totally\n tube free (feeding and oxygen). This gave Tom a quality of life he’d never experienced before.\n
2/ The arrival of his baby sister Emily provided a comradeship and competiveness that saw him stay one step ahead of his sister in achieving milestones.\n Nothing can replace the importance of this sibling bond.
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3/ NAPA – therapy that was long and intensive yet suited Tom and saw him take his first steps and learn to converse without the use of his podd book. NAPA\n is an intensive therapy program run in California and now Australia which sees Tom complete 75 hours of therapy in 3 weeks. It’s long and grueling\n and challenges Tom past his comfort zone yet despite this, Tom loves it. At the end of our last intensive in LA Tom was in floods of tears because\n he didn’t want it to finish. He articulated that, ‘NAPA makes my body work better.’
\n
Tom attends NAPA therapy clinics 3 times a year which cost in excess of $10,000 each for the therapy plus the costs of flights, accommodation and carers\n for Emily. As well as NAPA, Tom has weekly speech sessions and fortnightly physio and OT sessions as well as weekly horse riding lessons (balance and\n core), tennis lessons (balance and reaction times) and swimming lessons (body in space). Add to this soccer clinics, cricket, little athletics and\n his neurologist will be happy!!His OT has suggested keyboard lessons would be wonderful for him to learn how to isolate the use of his fingers. Wherever\n possible, we find a fun way to teach the skill because at the end of the day Tom is still only an 8 year old child.
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In the classroom at our local Primary School Tom is holding his own academically and currently uses modified equipment to access the same curriculum as\n his peers. Currently he uses an iPad and specialist software but in the future he will need to convert to a computer as well as adding additional software\n as directed by his team of specialists. At home, on top of his homework, Tom completes a daily physio program which builds strength and his skill base.\n Tom is learning to ride on an adapted bike. His physio is working with him to progressively gain the skills required for bike riding. We hope to get\n him into the bike program to help consolidate the skills. He has sensory motoric orthotics that help him fell his feet in space. All of this has led\n to a child who walked through the school gates in a walker almost 3 years ago and now kicks soccer balls and runs 23 laps of the school oval to raise\n money for the school in the whole school lap-a-thon.
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We are setting up this page because we believe that harnessing Toms potential now gives him a chance at independence later in life. We believe if we put\n in the hard yards now Tom will develop the skill set that is required for independence but this level of dedication comes at a high price. Tom is awesome\n and we are proud to be part of Team Tom. He is the type of child who, once you’re part of this world, he takes you on his journey.
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Thank you for helping our son each his potential.
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To see more of Toms Journey please watch his inspirational stories – 2013 Marathon and his NAPA story\n
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\n

Our lovely son, Tom, has fought lots of battles, yet still smiles and laughs so much. Born premature at 27 weeks, with many complications and multiple\n disabilities, our brave boy has undergone over 60 surgeries. Tom has proved and continues to prove countless people wrong about his abilities,\n in fact he strives to achieve anything he sets his mind to and thrives because he gets on with it and gets it done.

\n

Tom has a complicated head shunt joined in 2 places which cannot be knocked. This is tricky as Tom is severely vision impaired and wears glasses only\n to protect his eyes from bumps too. Tom is also hearing impaired but refuses to wear a hearing aide; he is pitch perfect and he cannot handle the\n adjustments to sounds.

\n

Turning 13 this month, Tom is very slight in stature and weight. He has trouble with chewing and swallowing lots of foods and can be tactile sensitive.\n Missing all his carpel bones, with some joint abnormalities and low muscle tone, makes breaking a fall difficult to protect his head and eyes.\n Tom has quite a weak core and would benefit greatly from some equipment to assist him building his core muscles and gaining some strength. It would\n also help him with his lower limbs and being more stable walking on uneven ground, particularly as he cannot see where he is going. Among other\n disabilities, Tom falls on the Autism Spectrum (to make life just a little more interesting).

\n

His achievements so far have astounded us. Tom absolutely loves music and learns the piano through Skype lessons. Computers and technology is also\n a love of his, which is fabulous as they are the tools he needs. Tom has been granted an assistance dog. Tom is a first to have an assistance dog\n (not a Guide dog), where he is the actual guide, not the dog. Starting high school this year has been a year long process of orientation and mobility\n and more work still needs to be done. We have used Daniel Kish from World Access for the Blind with great success and we would dearly love to engage\n his services again as he will be here in April.

\n

Our families’ financial resources have been greatly impacted, with caring responsibilities, ongoing medical appointments to several specialists, personal\n and physical development and education needs, it is a fulltime job. Trying to provide Tom with what he really needs is a challenge when we only\n have one income coming in to our household.

\n

We are so appreciative of people’s generosity and would dearly like to seek some support for some items that will have a great impact in assisting\n us. At high school, to help him keep up, Tom really needs some computer equipment and assistive technology, Orientation and Mobility training at\n school and camp, some cognitive sensory learning therapy with physio, resources, appropriate weekend support shoes, special training crates and\n storage. These are all things that are currently out of reach for us. We are very grateful for any support we may receive in helping us make a\n big difference for Tom and his future. Thank you for your time and support.

\n

Regards, Karen, John & Tom Goldsworthy

\n

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Welcome to the fundraising page for our dear friend Trudy who lives here on the Sunshine Coast and has recently been diagnosed with Multiple Sclerosis.\n Trudy is a single mother, daughter, valued colleague, dear friend, and mental health professional who has helped hundreds through difficult times.\n Trudy herself is now faced with the enormous challenge of living with Multiple Sclerosis and she now needs our help! Every day tasks are becoming more\n of a challenge for Trudy so we have set up this fundraising page to raise money to assist with the ongoing medical expenses along with getting assistance\n for general house work etc.

\n

All donations big and small are so greatly appreciated by Trudy and will make a big difference in assisting her in recovery.

\n

We thank you from the bottom of our heart!

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\n

Hi Guys, My name is Will and I’m a 24 year old guy living with cerebral palsy. I love to live life to the fullest and keep myself busy. In order to\n gain further independence I would like to ask for your help. In the coming months I will be working with my assistance dog, Stella… Stella\n is a labrador cross retriever and she will be as expensive as she is beautiful!

\n

With ongoing costs such as veterinarian bills, food, personal care and grooming (just to start)…I would appreciate any assistance no matter\n how big or small. It means a lot to me and I’m sure Stella as well!

\n

More than just a donation I would love to hear from you and if you ever see me out please come and say hello. Thank you to for your time(and donation!)\n and thank you to Sunshine Butterflies for allowing me this platform. I am getting quite excited about Stella’s arrival and this money will help\n me to continue working with Stella. It really does mean the world to me so thank you from the bottom of my heart.

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Cheers guys, Will.

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\n

On the 29th January 2016 our beautiful boy, Xander Winston Neil Williamson was born. Brother to Maddison, our family complete. Xander has and continues\n to be a happy, healthy baby full of cheeky smiles and laughter. He was our dream baby!\n
\n
At 8 months of age, we noticed that Xander was not reaching his milestones. We raised our concerns with our GP, and our search for answers began.\n Little did we know what was to unfold. At 13 months of age we met with the Pediatrician who advised us that they thought Xander just had low muscle\n tone (hypotonia) but would run some tests to rule anything nasty out. Then told is to come back in 3 months. After leaving the ped office, we were\n not convinced in our gut we knew something wasn’t right, so we sort a second opinion. On the 13th April 2017 our lives were changed\n forever, that Easter will always be etched into our memory. With three small words, hopes and dreams for our beautiful little boy were changed\n in an instant. Xander was diagnosed with a rare genetic disorder called Pitt Hopkins Syndrome. I still remember leaving the consulting suites holding\n a piece of paper with “Pitt Hopkins Syndrome” handwritten on it! Also written on that piece of paper was a website that we were told to google\n for more information. No parent should ever have to face this, but it was the beginning of our journey.

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Pitt Hopkins Syndrome is a very rare genetic disorder affecting a specific gene in chromosome 18, called TCF4. There are approximately 500 cases worldwide.\n Xander become the 11th diagnose case in Australia. It is characterised by developmental delay, possible breathing problems of episodic\n hyperventilation and/or breath-holding while awake, gastrointestinal issues, lack of speech, and also distinctive facial features. Global developmental\n delays and hypotonia are significant and intellectual disability is moderate to severe, however, true intelligence is difficult to measure with\n the motor and speech delays experienced in many.\n
Most affected individuals are non-verbal and many never walk.\n
Other common characteristics are behavioral issues, a happy excitable demeanor, hand flapping, seizures/epilepsy and severe myopia (nearsightedness).\n
\n
How could our precious boy be one of the 500 cases worldwide? And 11 cases in Australia, there is no history of the condition within our family,\n we had a very uneventful, textbook pregnancy, we did everything we should.The reality is we had a better chance of winning the lottery, then having\n a child with Pitt Hopkins Syndrome. We will never know the answer to “why our beautiful little boy” ,” why Xander?”, “ why our family? “ Xander’s beautiful smile and laughter is contagious! He brightens the lives of everyone around him. He has changed our entire outlook on life, with every new day we appreciate the little things, just being able to walk and talk are things we took for grant until confirming Xander’s condition. Imagine not being able to tell the world your wants? And needs? Imagine not being able to feel the grass under your feet while you walk on your own. He has opened our eyes, our world is a better place, and we are better people because of Xander.
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As a parent you dream about your child growing up, getting married, having children, career, what sport they will play. For us looking to far ahead is hard, but although our dreams for Xander have changed, new dreams for our boy have been create.Our new dreams and hope for Xander’s are for him one day walk and talk. With our chosen therapy pathways we are confident that he will one day walk. We are also using speech therapy along with a communication device and sign language in conjunction with spoken language. We are hopeful that one day Xander will learn one or a combination of these methods to communicate. In the meantime, we are proud to be Xander’s voice and will always be his biggest advocates.

We know that the early years of a child’s life are the most important for learning. Early intervention is the key and can alter the course of developmental trajectories and will help prevent the onset of secondary complications. The next few years are critical for Xander developmentally.
In\n the months after Xander’s diagnosis we found that he just wasn’t improving at all, after months of Speech, Occupational and Physiotherapy therapy\n nothing seemed to be working. After months of investigation and research, we were lead us to an intensive therapy program called the Neurological\n and Physical Abilitation (NAPA) Centre in Sydney. NAPA offer specific and unique therapy programs for children with neurological and physical disabilities.\n Qualified Physiotherapists, Occupational Therapists, and Speech Pathologists are extensively trained beyond the norm. It differs from conventional\n therapy programs which usually involves short 30mins therapy session once a week or once a fortnight. NAPA provide a 3 week block of intensive\n therapy, which consists of 60 hours of therapy over a 3 week block. The results speak for themselves. Many children gain more progress in 3 weeks\n of intensive therapy at NAPA than they do in a whole 12 months of ongoing traditional therapy.

\n

Initially, we were dumbfounded that there was nothing like NAPA available in Victoria and also the expensive cost for a program, would it all be worth\n it? would it work? the time off work? the impact on our daughter and our family as a whole? Travel expenses? Taking Xander away from his normal\n routine and new surrounding?. After much discussion we decided to take the chance. Xander attended his first NAPA intensive in August 2017 and\n then again in December 2017. During this time at NAPA his therapies consisted of 2 hours each day of physiotherapy for two weeks solid. Our only\n regret was that we didn’t come sooner!

\n

Prior to August, Xander could not sit up unaided, he could not bare weight through his legs at all, he couldn’t roll or hold a bottle. Each trip we\n seen significant gains in his development. First, he started to babble, he developed body awareness, his core strength improved remarkably and\n he developed his natural reflexes. More than anything he became aware of the world around him, he wanted to be apart of it.

\n

The real game changer was Xander’s first 3 week intensive block held in February this year. Which consisted of Occupational therapy, Physiotherapy,\n CME and Speech therapy for 4 hours each day for 3 weeks. No-one could ever understand the joy we felt when we heard the words, MUM, HI, MORE and\n UP….Words we had long given up hope of ever hearing let alone ever thought possible. The joy when we watched our beautiful boy take steps\n with minimal assistance in therapy. The joy of seeing our little boy bare weight on all fours and wanting to move / rock forward, his beautiful\n smile tells us so much and we are so proud of how far he has come and continues to go. These results are from thousands upon thousands of repetitions,\n everything with Xander is learnt and super hard work for him, for Xander taking 5 steps is like us climbing Mt Everest.

\n

We know that NAPA provides the best platform to give Xander the best possible chance of achieving so much more than originally thought. We know that\n by providing Xander with as much early intervention as possible, it will allow his brain the chance to develop to the best of its ability. We want\n to give our little boy the best opportunities to reach his full potential. Xander will be attending the NAPA Centre in June 2018 and again in November\n 2018, each NAPA intensive costs $10,500. We have seen the results and know that by attending 3 NAPA intensives per year for the next 3 years will\n see our little boy climb mountains. Our reality is that as a family we will be spending over $30,000 per year to give Xander the best possible\n chance. This does not take into consideration additional equipment that he requires in order to reach his full potential. While the cost is great\n the rewards are worth every cent!\n
\n

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Nobody expects to find themselves on this journey; it is something we didn’t plan for, I wouldn’t wish it on anyone, we didn’t expect and we honestly\n didn’t think we could handle it but Xander gives us our strength, his smile makes the darkest day brighter, our love for him keeps us fighting.\n Xander’s future and therapy is our priority. All donations, no matter the size will go along way to giving Xander the best possible opportunities\n in life, primarily his ongoing therapy (speech, physiotherapy and Occupational therapy), NAPA programs and when required the purchasing of specialized\n equipment that he may need. Xander is teaching us so much more than we ever thought possible. His strength guides us each day, his courage, his\n perseverance is endless.

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That smile makes us fight everyday for a better tomorrow. We aren’t just going to sit back and hope for a miracle, we are going to fight for one!!\n He is teaching us to be better people. We have strength that we never thought possible.

\n

We appreciate your support and sincerely thank you for the bottom of our hearts for your donation, support and love.\n
\n
They say it takes a village to bring up a child and for Xander this is most definitely true.

\n

Please share, educate and follow his journey on facebook and instagram xandersxteam

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Together we are XandersXTeam\n

\n

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Donate to Sunshine Butterflies Donate Now

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ABN: 46 296 442 336 |\r\nNDIS provider registration Number: 405 000 9184

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\n

Avalon was born in 2011 at 30 weeks gestation, via an emergency caesarean section. Due to her low birth weight of just 1024 grams and a severe infection,\n Avalon suffered damage to the white matter in her brain. This is a condition known as Periventricular Leukomalacia (PVL), which is commonly fatal\n to premature babies.

\n

Avalon spent eight weeks in the NICU and SCBU units in total. She was the 'Feisty' child according to the nurses, which we came to realise was a blessing,\n as she will need all of that strength for the life journey she is on. By the time Avalon left hospital she was 37 weeks gestation and weighed 2.2\n kg. This weight is half the weight of a healthy child born at full term. When Avalon was one year old she was diagnosed with Cerebral Palsy spastic\n diplegia and dystonia. Avalon's condition affects one arm, both of her legs and her balance.

\n

From 33 weeks gestation, Avalon has been seeing Physiotherapists, Occupational Therapists, Speech Therapists and Specialty Therapists. She has responded\n well to all of these therapies and really enjoys the interaction and the feeling of achievement she gets.

\n

\n
As parents, we are constantly on the lookout for treatments and specialised equipment that will give Avalon the best opportunities. In 2013, we\n discovered a treatment centre called NAPA Center, in Los Angeles. The centre specialises in Intensive therapy, which utilises a special suit. Three\n weeks of therapy at The NAPA Center is the equivalent to twelve months of traditional therapy, and combined with all of the regular therapies she\n requires, the results are very encouraging. In March 2014 Avalon completed a three week Intensive Model of Therapy (IMOT) with outstanding results.\n If we can continue to provide these intensives three times a year, along with the specialised equipment and regular therapies she requires, Avalon\n will have a very good chance at gaining some valuable independence in her life.

\n

In November 2017, Avalon had an incredible surgery in the United States called Selective Dorsal Rhizotomy (SDR). This surgery has permanently removed\n all of the muscle tightness in her legs that cerebral palsy has caused. The surgery has greatly reduced any chance of muscular and joint deterioration\n in the future, allowing Avalon to live in a body that will not wear down and cause her immense pain. The cost of the surgery including air fares\n (travel), accommodation and living expenses was AU$130,000.

\n

Following the surgery Avalon has started her extensive rehabilitation program. This involves years of regular and intensive therapy, including a special\n trip to Step By Step therapy in New York, USA. The therapy will allow her to grow muscles that have never previously been used due to the muscle\n tightness, and to gain the strength she needs to continue forward in her ‘new’ body. Our annual therapy cost is now more than $60,000 which is\n virtually impossible to meet, but how can we put a price on her independence.

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This opportunity for Avalon was an amazing one and she was extremely lucky to have been selected after meeting strict criteria. With the correct rehabilitation,\n Avalon will achieve amazing things!!

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We thank you for helping Avalon to have that chance xx

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