Thomas Roach

Thomas Roach

 

Hi, I'm Thomas Roach

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. 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. 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 coming home.

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 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 feeding tube. At this stage Tom was categorized as having severe chronic lung disease, hypertension, severe oral aversion and global developmental delay, all of which you can grow out of.

 

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 disorder. With this came a life long diagnosis which presented itself through motor challenges and major speech delays. Tom’s never give up attitude 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 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 is still here today. His cheeky personality is why you can’t help but love him!
There are 3 life defining moments that stand out in Tom’s journey:
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 tube free (feeding and oxygen). This gave Tom a quality of life he’d never experienced before.
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. Nothing can replace the importance of this sibling bond.
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 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 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 he didn’t want it to finish. He articulated that, ‘NAPA makes my body work better.’
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 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 core), tennis lessons (balance and reaction times) and swimming lessons (body in space). Add to this soccer clinics, cricket, little athletics and 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 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.

 

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 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 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. 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 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 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 money for the school in the whole school lap-a-thon.

 

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 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 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.
Thank you for helping our son each his potential.
To see more of Toms Journey please watch his inspirational stories – 2013 Marathon and his NAPA story
   

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Hello, I'm Georgia Conn

Georgia is a 12-year-old smiling, shining star! 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 she is unable to walk, talk, stand, sit, eat, wash, sleep, play, or even go to the ba...

Read my story

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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.
\n
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.
\n

 

\n
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.
\n

 

\n
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.
\n
Thank you for helping our son each his potential.
\n
To see more of Toms Journey please watch his inspirational stories – 2013 Marathon and his NAPA story\n
\n\n \n \n \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

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

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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
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This is every parent’s worst-case scenario.  Our world imploded, and her tough journey began.\n
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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

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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

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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
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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
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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
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Your support will help Georgia make a difference to the world.

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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.
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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
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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
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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
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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
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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
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The Conn Family truly thanks you for your support for Georgia.\n
GoGeorgiaGo!!!!
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