4yo with dementia: ‘I’m losing him every day’
A FOUR-year-old boy has forgotten how to talk after being diagnosed with a rare condition that's slowly robbing him of his childhood.
Little George Young is one of the youngest people in the UK to suffer from childhood dementia - a condition usually associated with age.
The little boy was diagnosed when he was just three years old and, after learning his first words "mama" and "dada", he is now a mute.
George has Batten disease, a fatal genetic disorder of the nervous system that leaves children suffering cognitive impairment, seizures, and progressive loss of sight and motor skills.
Now his devastated mum Claire, 35, has written a bucket list in order to give him as many experiences as possible before his condition worsens.
A symptom of George's condition is dementia, which has slowly robbed the little boy of his childhood.
Claire, a solicitor from the UK, 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.
He was admitted to hospital where doctors diagnosed him with epilepsy.
But he developed other symptoms, including a decline in motor skills, and in February 2017 he was 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."
Currently, there is no treatment for George's condition.
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."
So far from George's list, they have ticked off a helicopter ride, being driven in a fancy sports car, riding the roller-coasters 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 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."
Claire and George also 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 last 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 stomach.
George has also taken part 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.
The Batten Disease Family Association (BDFA), which supports families dealing with the disease across the UK, organises an annual conference day which gives families the opportunity to meet in 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 [for] and support those with the complexity of childhood dementia and Batten disease."
Batten disease occurs in around four of every 100,000 births in the US. The incidence in Australia is not known.