Little George Young is the youngest person in the UK to suffer from dementia. At the age of just four, he's already lost most of his speech.
Determined to make the most of the time that George has, his mother, Claire, has written him a bucket list.
George was diagnosed of Batten disease at the age of three, one of the youngest people ever to have it. He has already forgotten his first worlds of 'mama' and 'dada'.
Dementia is a side effect of Batten disease, a fatal genetic disorder that affects the nervous system that leaves children suffering cognitive impairment, seizures, and progressive loss of sight and motor skills.
“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," Claire, a solicitor from Warwickshire said.
“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 was admitted to hospital after having seizures at nursery. He was diagnosed with epilepsy.
Unfortunately, he began to develop other symptoms, such as a decline in motor skills. In February 2017, he was officially diagnosed with Batten disease.
“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 and it will change me as a mum and as a person forever I’m sure.”
Tragically, there is no treatment or cure.
“It’s a massive life lesson and it is heart-breaking to know that I am going to lose him, but we are trying to make the most of it.”
George has already crossed off a helicopter ride, being driven in a fancy sports car, riding the roller-coaster at Peppa Pig world and meeting soldiers at Buckingham Palace.
“There is a theme with all these things. He loves the speed - it brings out such emotion in him,” Claire says.
“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.”
George has also taken part in the ‘Dementia Strikes Children Too Campaign’, calling for better clinical education, including research and emphasis on earlier diagnosis. It is estimated that 150 children in the UK have Batten disease.
