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Team Ashton

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My name is Ashton Henri, everyone calls me Ash and I am fast approaching 5 years old!

I have had a really busy year experiencing lots of new things and this year we have some big ticket items we are fundraising for including a wheel chair, a modified vehicle and an elevator for our home. But first, a bit of history:

When I was born my mum was really worried because I had a big body and a little head. This happened because my brain didn’t grow. It took the doctors 6 months to finally give my small head condition a name - ‘Microcephaly’ - and at the time the paediatric neurologist told my mum and dad, ‘take him home and love him, that’s all you can do.’ Thank goodness mum and dad didn’t listen!

It was a rocky start to life with 8 surgeries in 8 months on my left kidney and tests galore, but my family is the best, especially my big brother Sam, and they supported me through all the trips to the hospital.

There’s a long list of terms they use to describe what I have: Cerebral Palsy, Primary Microcephaly, Hypotonic Dystonia and Developmental Delay and, most recently, Atypical Rett Syndrome. Rett Syndrome almost only appears in girls and boys that are born with it suffer encephalopathy (brain disease) and pass away by 2 years of age. There are only 4 people in the entire world who have the same genetic condition as me, microdeletion on chromosome 14q12, but I’m the only boy. So, you can see how much of a super exception-to-the-rule kid I am!

I love going swimming, driving in the car and I really LOVE eating chocolate. I have a busy time going to Pre Kindy, Physiotherapy, Occupational Therapy, Speech Therapy, Hyperbaric Oxygen Therapy… therapy, therapy, therapy!

I wear hinged AFO’s that we call my ‘legs’ and a really excellent garment we call a Supersuit (made by Second Skin in Brisbane). I wear it every day and this helps with my hypotonia (low muscle tone). I need a new one right now because I keep growing. They are pretty expensive - my last one was $1980 – and as I get bigger, so does the cost!

After last years’ fundraising and grant support I started regular speech therapy, Riding for the Disabled, I got a new comfy car seat and a super-fast, bright red walker which I practice in every day.

Like I said, this year the Team Ashton goal is for a wheelchair, modified vehicle and an elevator for our home. You see, mum has to lift me in and out of the car and carry me up and down the stairs, but as I get bigger, it gets harder for her.

My mum and dad want to give me the chance to live a happy, healthy and fulfilling life and to grow up as independent as possible, moving around the house and getting outdoors to play with my big brother, Sam. To help me get there, they need your help. You can join my Team Ashton Hayes Fan page on face book by clicking here and become part of TEAM ASHTON. Every bit of support counts and all donations of $2 or more are 100% tax deductible.

For more information, call my mum, Angela, on 0410 559 698 or email her at angelam99@netspace.net.au and teamashton@facebook.com Thank you!