A heartbroken mom has shared how her five-year-old son suffers from dementia – an illness normally associated with the elderly.
George Young, from Kenilworth, Warwickshire, has Batten disease.
It is a very rare disease and one of the symptoms is dementia.
He has already lost the ability to say his first words – “mum” and “daddy,” his mother Claire told the Independent.
Claire, a lawyer, said: “I was not aware of childhood dementia, I had no idea it could happen to toddlers at all and you definitely don’t expect it to happen to one. of yours.
“He developed normally as a little boy, he hit all of his major milestones.”
She said Birmingham live: “People always associate dementia with the elderly. When you put it in the context of a toddler, it sounds quite heartbreaking.”
She recounted how George is now losing his sight, having already lost his mobility.
He was diagnosed at the age of three and must now be hoisted to bed in a wheelchair and tube fed.
Claire said: “I can feel his eyesight slipping, so the sounds and smells are becoming more and more important to him.”
She continued, “He’s still a Peppa Pig fan and when he hears the music he’s excited and knows it’s on.
“He’ll happily watch episode after episode, but I think it’s more noise now than being able to fully engage.
“I can walk quietly towards him and he won’t react but as soon as he smells my scent he knows I’m there.”
Claire wrote on a Just Give page : “
“There is currently no cure for this disease. As a result, our beloved beautiful boy will heartbreakingly lose his battle with it before he is old enough to fully experience life and all of its possibilities.”
She explained how she made a to-do list for him – things they would have done together.
So far, he has taken a helicopter ride, driven in a sports car, roller coastered at Peppa Pig World, and met soldiers at Buckingham Palace.
What is Batten disease?
Late infantile Batten disease is a neurological disorder that occurs in children between the ages of 2 and 4 years old and is an early onset form of Batten disease.
Atten’s disease is a disorder of the nervous system that results in death and usually begins in childhood.
According to NINDS (National Institute of Neurological Disorders and Stroke), the disorder will usually begin to appear in children between the ages of 5 and 10, who may have previously been completely well.
There are many forms of the disease, but late childhood Batten disease occurs between 2 and 4 years of age.
The first signs of the disease are loss of muscle coordination and seizures. According to NINDS, this form evolves quickly and ends in death between 8 and 12 years.
Batten disease is very rare: it occurs in five or six births per year in the UK, while research shows it is more common in Finland, Sweden, other parts of northern Europe and in Canada.
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