Gracie and James share an incredible bond as siblings.
Although James is slowly forgetting basic skills after being diagnosed with a condition that causes childhood dementia, his sister is by his side every step of the way.
Parents Diana and Dean Young. from South Shields, Tyne and Wear, first realised something was wrong when James was two, but he wasn’t diagnosed with the nervous system disorder Batten disease until the age of four.
Now, he losing the ability to walk properly and feed himself unaided.
But James is still smiling – largely thanks to being helped by Gracie, nine, who helps him walk, eat his meals, and even reads him his favourite stories.
Dean, 33, said: ‘Gracie is like another mum to James. She’s a saviour.
‘She’ll do anything she can to help.
‘She’ll read the Gruffalo with him, it’s his favourite book and he loves reading it with her.
‘Gracie also goes into his room each morning and wakes him up. At night she’ll go into his room before bedtime and help pick his pyjamas out.
‘James loves dinosaurs so Gracie loves to pick them up and show them to him.
‘They even have baths together and she’ll play with his toys in the bath.’
The couple have been open with her about James’ condition and she understands what is going to happen to him but she is always positive.
Dean added: ‘Gracie has been an angel.
‘Every time James wants a drink she’ll go and get him one, she helps feed him at most meals too.
‘She’s constantly mothering him. She’ll do anything she can to help like even turning the oven on before we cook dinner.
‘She’ll even try and help wash the dishes, she just wants to help her baby brother.’
The first sign of James’ condition were when developmental problems as he wasn’t really talking by the age of two.
Diana, 29, said: ‘We knew there was something not right. When James was two we thought he’d be talking and doing toilet training but he never really spoke.
‘Trying to get him to go to the loo didn’t really happen. It just progressed from there.
‘He started developing behavioural problems. He would smash things and I remember him throwing apple juice at the TV once.’
They were in the process of getting him tested for autism but just two days after their wedding in June 2019 the couple were forced to return to the UK from their honeymoon in Spain after James had a severe seizure.
James was initially diagnosed with Doose syndrome in August 2019 before being finally diagnosed with Battens disease in January 2020.
The couple believes that the severity of his condition could have been avoided if he had been diagnosed earlier.
Diana said: ‘He’s struggling at the moment. He’s having a lot more seizures and his medication isn’t really working.
‘He’s struggling to walk and has tremors, even when he’s asleep.
‘It’s been a total fight. When he was two we thought he had speech problems but when he hit three we knew there was something wrong.
‘We kept on getting palmed off for epilepsy but we knew there was something not right.
‘Because of the delays, it’s probably too late to stop the symptoms progressing now so we’re stuck in a situation where hopefully we’ll be able to prolong his life.
‘Any treatment will just slow the progression of the disease, but not cure him.’
The couple has both had to leave their jobs to care for James and it has had a huge impact on the whole family.
Dean said: ‘When we got married we thought our lives would stretch out forever and now it’s all gone.
‘We both feel angry. Why James? Why us? We were supposed to have the rest of our lives together in our perfect family.
‘Everything seems very dark and very uncertain.
‘It’s been terrible. I’ve cried every day since he was diagnosed.
‘Diana and I both feel totally helpless. We know the disease is going to take over, we just don’t know when.
‘He’s already deteriorated a lot. He can’t walk without assistance and he can only say ten words or so and they’re fairly unclear.
‘The whole experience has been like a bad dream.’
James’s family are raising money on GoFundMe to pay for their travel expenses while James has his treatment.
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source https://metro.co.uk/2020/02/05/nine-year-old-girl-helps-little-brother-dementia-forgets-walk-talk-12185188/
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