Thomas Roach

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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.

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.

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!

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.

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.’

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.

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.

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.

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\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

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

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

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

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

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

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

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

careers

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Donate to Sunshine Butterflies Donate Now

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

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.

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

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.

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
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!

Abbey would tap under her chin, which is her way of saying THANKYOU!

\n
Thank you in advance,

Love, Lucy and Josh xoxoxox

\n
\n

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