Billy S's quilt    (Quilt Open)

Theme details

Space - Perhaps some of his interests on the label?

Child Interests

Favourite colour is green.
He loves Xbox, Roblox, Minecraft, Sonic the hedgehog, Super Mario, coding and computers, axolotls, penguins, space

Biography

Billy started walking later than normal and always had trouble with his balance and picking his feet up when walking, but we just thought all kids are different and he’ll get there.

He started school a month before his 4th birthday and one day his teacher asked if he had seen a doctor about his legs and the way he walks, and it hadn’t occurred to us before that, that there may be a problem. We went to see the GP who thought he may have hypermobility, so we were referred to physio. We finally got a physio appointment after 4 months, and they ordered blood tests. The tests showed a problem with his muscles, and 3 weeks later we had a diagnosis of Duchenne. We had never heard of it, but after some research our world came crashing down. Realising that this was a muscle wasting disease giving our gorgeous boy a much shorter life span than he deserves.

Despite all this he's a very happy boy, he doesn’t worry about not keeping up with his friends, enjoys his wheelchair that we use for days out. He takes his daily medications with a smile, and doesn’t complain about the constant hospital appointments, blood tests, physio, scans and even sleep studies. As a family we take each day as it comes, and try not to worry too much about the future for him.

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