A YOUNGSTER diagnosed with fatal childhood dementia has forgotten how to say his first words.
Four-year-old George Young from Kenilworth has lost the ability to say ‘mama’ and ‘papa’ due to his battle with Batten disease.
His fight against the illness is made even harder as he has been diagnosed with a rare strain which only one other child in the world has.
Batten Disease – also known as childhood dementia – leads to affected youngsters going blind, becoming wheelchair-bound and mentally impaired with most cases proving fatal by the late teens.
George’s mum Claire said there was currently no treatment for the disease, which her son began to show symptoms of when he started to suffer seizures last year.
The solicitor – who is separated from George’s father – said: “His diagnosis turned my whole life upside down but it just made me cherish the time that I have with him because I don’t know how much of that time I have left.
“I think from a mum’s perspective it’s just unfathomable to accept that you’re going to lose your little boy. I’m still trying to find an answer to that challenge.”
To make George’s time as happy as possible his mum has compiled a ‘bucket and spade’ list.
So far the youngster has flown in a helicopter, taken a drive in a sports car, and met guards outside Buckingham Palace.
George and Claire also plan to visit ‘Dippy the Dinosaur’ at Birmingham Museum and go indoor skydiving.
She said: “There is currently no treatment for the condition. Therefore our handsome, darling boy will heartbreakingly lose his battle before he is old enough to fully experience life and all its possibilities.
“In the meantime, everyone in his life is making every opportunity and experience the best it possibly can be for him so that he doesn’t miss out at all.”
Claire is also hoping to raise awareness about Batten Disease and how little is known about the neurological condition.
She is supporting an awareness-raising campaign called Dementia Strikes Children Too.
George was diagnosed after just a few weeks but Claire admits it was only because his doctor had a special interest in Batten Disease.
She said: “Even some of the professionals haven’t ever heard of it, much less supported a child with it.
“I think a lot of families have spent months trying to pinpoint what exactly is wrong with their child and we were lucky enough to have ours within a few weeks of George initially presenting with seizures, so we’re really thankful for that.
“I think it’s really important to raise awareness as much as possible about rare diseases like childhood dementia. For change to happen right at the top of society, and have that policy feed through right down to local services, so that George can have all the help and support that he needs.”
Visit childhooddementia.co.uk to find out more about the campaign.
