My name is Ashton Henri, everyone calls me Ash and I am 6 years old!
I love going swimming, reading books and I really LOVE eating chocolate.
I started kindergarten this year at Wilson Park School for Specific Purposes and it is AWESOME. My mum and dad want to give me the best chance to live a fulfilling life with dignity; to brush my own teeth, choose what I would like to eat and say “I love you mum and dad”.
This year we are fundraising for a new shower chair/commode, in home care support and a wheel chair modification for our vehicle.
Please help us to reach our target by making a donation to Team Ashton. You can also like us on Facebook, look for Team Ashton with the lighthouse logo and sign up for our newsletter at www.teamashton.com.au.
I have a new baby sister and my big brother, Sam, is still my hero.
The last 12 months have been extraordinary. I have travelled overseas to an amazing camp where I met other kids and families with chromosome 14 deletions. While no one else had exactly the same deletion as I do, on q12 because there are only 4 known cases in the world, it was the best experience ever, we all made life long friends.
I have also been doing lots of therapy and just recently I amazed even my mum when I took 6 steps forward in my walker all by myself, look out I am on the move!
After last years’ fundraising and grant support I started regular Prompt speech therapy and mum and dad were able to purchase an iPad to use as my communication device. Just this week I was able to ask mum for some cheese for breakfast for the first time ever, that was super cool.
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 pediatric 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, 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!
Every bit of support counts and all donations of $2 or more are 100% tax deductible. Follow me on Facebook at Team Ashton with the lighthouse logo.
For more information call my mum, Angela, on 0410 559 698 or email her at email@example.com
With heartfelt thanks and gratitude, Ashton xxx