Will was a happy and cheerful 9 year old when he was diagnosed with Adrenaleukodystrophy, or ALD; a very rare genetic disease that destroys the protective sheath around the brain’s neurons.  His mum, Emma, tells his story:

“Will was nine when we started becoming concerned about him.  He had been top of the class at school, but started to fall behind.  We saw a rapid decline in his handwriting and his co-ordination. Quite close to Christmas, we noticed that one of his eyes had started turning out, and he seemed to be losing his sight.  We were so desperate that on 27th December, we took Will to A and E. 

After some tests, we were told the awful news that Will had ALD- which we’d never heard of, but is destroying his brain gradually.  We know that one day he’ll lose the ability to hear and speak and he will end up in a vegetative state; but no one can tell us when or how fast this will happen.   We just kept thinking that they’d made a mistake, we couldn’t believe it.  It was such a shock, because up until then he’d been perfectly fine. We are still finding it so difficult, and the loss of all the things which have been taken away from Will’s future. We try not to think about the past or the future, but just to live for now, and just get through each day.

Life caring for Will can be incredibly hard.  He wakes in the night, and is incontinent so it’s like going back to his baby days.  His condition means he has dementia, and gets very angry and anxious, because he knows something’s changing and happening to him, but he can’t understand what or why.  Everything we do is to keep his spirits up.  Because he’s lost his sight, Will lives in his imagination, and we try to make him laugh as often as possible.

When we first heard about Bluebell Wood, my initial reaction was “No!” but as soon as I walked through the doors I knew it was a beautiful place.  Will loves the soft play room, riding round on the go-karts in the garden, and the delicious food. 

Will’s younger sister Ella loves everything at Bluebell Wood- particularly the arts and crafts.  It’s been so hard for Ella- her life has changed such a lot since Will’s diagnosis and she really misses being able to play with her big brother the way she used to, and everything that was.  She comes to the Bluebell Wood sibling groups and the Activity days which are a great help and support.

At the point where we need it, we know now we want Will to be at Bluebell Wood, whenever that is.

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