Batten Disease: My Four-Year-Old Son Is Forgetting How To Walk, Talk And Eat

When George was two years old he could walk, talk and play. His mum couldn’t have predicted that just two years later he would start to forget how to do all those things and have to use a wheelchair to get about.

“He used to run everywhere, he would get out of the car and just take off. I thought that was just him being funny, but now I think, on some level, he knew he only had a certain amount of time to do all of that,” his mum Claire Young, 35, from Kenilworth, tells HuffPost UK. “He was trying to pack in as much as possible.”

George has Batten Disease, a neurodegenerative condition, which causes children to suffer from dementia. It’s estimated there are between 100-150 children and young people currently living with this diagnosis in the UK.

George’s life skills will slowly deteriorate, yet the rate at which this will happen is unknown as it varies from child to child. Claire also doesn’t know how much time she has left with her son, as she has been told his life expectancy is around nine or 10. Maybe 12 at a push.

“It’s very difficult so…

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