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A four-year-old boy with dementia is being robbed of his childhood after cruel disease dementia caused him to forget how to say his very first words – ‘mama’ and ‘dada’.
Little George Young is now mute after being diagnosed with the condition last year, aged three.
Usually associated with older people, the tot is one of two boys in this country to suffer from a rare strain of Batten disease.
Now his devastated mother Claire, 35, has devised a ‘bucket and spade list’ in order to give him as many experiences as possible before his condition deteriorates further.
Batten disease is a fatal genetic disorder of the nervous system that leaves children suffering cognitive impairment, seizures, and progressive loss of sight and motor skills.
George suffers from variant CLN8, one of the most uncommon forms of the disease which has 14 different variants.
He is one of just two boys in this country to have the number eight form of the condition.
A symptom of the condition is dementia, which has slowly robbed the little boy of his language and motor skills.
Claire, a solicitor from Kenilworth, Warwickshire, said: "I wasn’t aware of childhood dementia, I didn’t know it could happen to little ones at all and you especially don’t expect it to happen to one of your own.
"He developed normally as a little boy, he hit all his major milestones.
"He did have a speech delay when he was two, but he did have a few words so it wasn’t a major concern.
"Despite not being able to speak now, George is such fun, full of mischief, he loves being in company and is just a lovely little boy to be around."
In October 2016 George started having seizures at nursery and once admitted to hospital, doctors ran tests and he was diagnosed with epilepsy.
But doctors were suspicious because of some of his other symptoms and in February 2017 he was diagnosed with Batten disease.
Fortunately, the pediatric neurologist who looked after George at Birmingham Children’s Hospital had a particular interest in the condition and her insight allowed a diagnosis in only three months, when usually it can take up to two years.
"It would be an understatement to say it turned our world upside down," Claire said.
"Last year I was just in this sort of haze for ages, accepting that news about your child, not knowing what the future holds for him.
"It’s been incredibly difficult but it will change me as a mum and as a person forever I’m sure."
Currently, there is no treatment for George’s variant and he is expected to go rapidly downhill.
Claire added: "It’s a massive life lesson and it is heartbreaking to know that I am going to lose him, but we are trying to make the most of it."
Following George’s diagnosis, Claire compiled a ‘bucket and spade’ list, setting out a host of activities she wants George to experience before he is too unwell.
"It’s a list of things I would have done with him in years to come but won’t have the opportunity, so I want to try and do as much of that with him while I have the chance," she said.
So far George has had a helicopter ride, driven in a fancy sports car, been on the rollercoasters at Peppa Pig world as well as meeting soldiers at Buckingham Palace and trying coffee.
"There is a theme with all these things. He loves the speed – it brings out such emotion in him," she said.
"Because he doesn’t have any language it’s so important to hear him laugh, express himself and get excited.
"All these amazing things help him do that and so I want him to do as many of those as possible."
The pair have plans to visit ‘Dippy the Dinosaur’ at Birmingham Museum, go indoor skydiving as well as a tobogganing trip in Europe, arranged by the Make-a-Wish charity.
Over the past year George has lost his ability to stand, walk and communicate.
He has a postural chair which he sits in to support him, as well as a bath seat to keep him safe in the water and he will eventually be fed through a tube in his tummy.
Claire said: "A routine is very important for children with this condition.
"It helps keep them calm and stable and it helps their expectation of what’s about to happen.
"It’s quite normal to an extent, getting up, having breakfast and going to school, but there are just medical bits to do.
George has played a central role in the ‘Dementia Strikes Children Too Campaign’ which calls for better clinical education including research into prevalence across the UK and a push to get earlier diagnosis.
Photographs of six children living with dementia dominate the advertising space at Westminster Underground station to help raise awareness about the disease, which is normally associated with adults.
Clare added: "The strategy is to get MPs commuting to work to see these posters, stop and have a think."
A Facebook Group was set up to provide Battens families with a forum in which to share experience, advice and recommendations.
The Batten Disease Family Association (BDFA), which supports families across the UK, organises an annual conference day which gives families the opportunity to meet person.
Harriet Lunnemann, BDFA spokeswoman, said: "We help the families to understand what this means for their child or young person and also work with professionals to raise awareness of childhood dementia.
"We enable professionals to find strategies to care and support those with the complexity of childhood dementia and Batten disease."
The BDFA estimate there are around 150 children and young people in the UK who have Batten disease.
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