Liverpool mum faces race against time in fight for earlier diagnosis of disease that sees kids develop dementia
If undiagnosed Battens Disease Battens causes blindness, disability and eventually death
A Liverpool mum, facing a race against time, is vowing to keep fighting for earlier diagnosis of a disease that sees kids develop dementia before their teens.
10 year old James Toohey (Too-ee) was diagnosed with Battens when he was 2 and if untreated causes blindness, disability and eventually death.
On International Battens Day his mum Kate is opening up in the hopes other families can get the same life changing treatment he's been receiving :
"At the age of ten I got told he wouldn't be able to walk, he wouldn't be able to talk and he wouldn't be able to see and probably have dementia and be having over three hundred seizures a day. I got told I'd lose my baby at the age of twelve".
"He can still walk, he can still talk, he can still swallow. He hasn't had a seizure for over five years which is unbelievable for a Battens child. He has completely defied the odds and I've never been prouder of him".
James needs infusion treatment every two weeks in London and Kate is now campaigning for similar infusion treatment for the eyes :
"It's heartbreaking, I don't want it to get to the point where my child can't see me.
"When your child has already lost the ability you can't help them then. Early diagnosis for children with Battens, we catch the signs they can get the type of treatment that James receives. Battens is brutal but if it's caught in time and put on this treatment it's a lifesaver".