'I'm making the most of the time I have left with my boy after shock diagnosis'
is an ultra-rare, life-limiting condition that an estimated 100-150 people in the UK are currently living with.
Symptoms of the incurable condition include blindness, loss of speech and loss of control of movement.He hasn't said mummy in quite a while, but I heard him say it the other day, clear as dayIt means children with the disease forget everything they have learned in their short life. "He's deteriorated in terms of knowing colours and things, but we're hoping he'll be able to regain them after treatment."At the moment, he's lost his mobility. He can't walk on his own or stand unaided, and he wants to run but he can't."
"Now we go down to Great Ormond Street every fortnight for him to have a brain infusion, and hopefully after six to 12 months his symptoms will level out, but it won't stop the blindness.”
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