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.