Jack was born on 9th July 2008.3742-original

Jack is a happy smiley little boy who only cries when he is unwell. He is much loved by all of us, he adores his big brother Robert and Robert adores him.

Jack seemed to be developing like any other baby until he had a stay in hospital and everything seemed to stop. We kept telling our Health Visitor something was wrong but she said I was paranoid!

By 8 months of age Jack wasn’t even attempting to sit up, reach for toys or anything, after a lot of fighting we got our GP to refer us to see a Paediatrician who said that Jack has some sort of syndrome but doesn’t know what, that’s when it all started, we had appointments left right and centre.

Jack had genetic testing to try and determine what condition it was including being tested for Angelman Syndrome and Fragile X which both came back negative. Jack’s DNA was sent to Paris to be tested for Moat Wilson Syndrome where they have found a letter change in the gene (ZFHX1B), which is associated with Mowat Wilson Syndrome we received a confirmed diagnosis of this syndrome in April 2012. Other confirmed diagnosis’s are Global Development Delays, Gross Motor Disorder and Brain Atrophy which was picked up on an MRI scan.

Jack doesn’t talk, has to have all food pureed, can’t feed or dress himself, is doubly incontinent, in fact he is totally dependent on adults. All this said and done and he can now crawl, clap his hands and waves hello & goodbye as well as signing money and bird. Jack can also drink out of a feeder cup and on Christmas Eve 2015 Jack took his first unsteady independent steps. He always has a big smile for everyone.

Jack attends Tweendykes special school, where he is making good progress, Jack loves going to school.

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