12 year old girl with incurable brain condition is living with dementia
This post is a mix of a UK article from The Mirror and a Danish article from Dagens.dk. I had written about Niemann-Pick Type C in my PhD thesis on technologies and quality of life in dementia care, as the youngest person diagnosed with dementia was 18 months old. It’s important that the public not only learns about dementias in general, but that it also affects younger people, including children.
Charlea Armstead was diagnosed with Niemann-Pick Type C, an extremely rare genetic disease which affects just 82 people in the UK. The disease is a known cause of dementia, and typically affects children.
She dreams of nothing but being a ballerina, but despite her youthful enthusiasm for singing and dancing, the 12-year-old lives with dementia.
Although she keeps on smiling, Charlea is gradually losing her memory and motor function due to the extremely rare and incurable brain condition called Niemann-Pick Type C. She was diagnosed with the genetic degenerative disorder when she was just two months old. It leads to a build up of toxins in the spleen and liver.
People with Niemann-Pick Type C rarely live into their teens.
Her mother, Danielle Craig from Oldham, is now trying to raise awareness of the disease which affects only 82 people in the UK and around 500 worldwide. She told the Daily Mail: “We don’t know when this cruel disease will take Charlea. We were told it could be two years or ten. Charlea is 12 and she’s still fighting. She has big dreams for a wonderful life. I just hope a cure is found soon so all her wishes come true.”
Charlea has been obsessed with dancing from a young age, but her favourite style is ballet. Aged six, she joined professional dancers at Manchester Opera House in a rehearsal for Swan Lake in a magical day out organized by the Make A Wish foundation.
Her mother, Danielle, said at the time: “She loves anything to do with singing and dancing. It really was a dream come true for her. I took a lot of pictures and she can’t keep her eyes off them.”
Charlea was given a special pair of ballet wings and a wand during the rehearsal.
Charlea Armstread looks like a typical English girl. But she isn’t. Despite her young age, this 12-year-old girl’s brain is aging very quickly and forcing her to live with the symptoms of dementia.
The 12 year old girl from Oldham has memory loss, confusion, motor problems, incontinence, and difficulties with swallowing. Problems, which shouldn’t be a part of Charlea’s life, and typically wouldn’t be for another 50 years. But the rare disorder is now causing her brain to age rapidly. There is no cure for the disease, and around 500 people have it globally.
Already as a newborn, Charlea’s mother, Danielle Craig, noticed that there was something wrong with her daughter, but it would be a long time before doctors found the cause.
“We learned that she may never walk or speak normally, and if she did, she could also lose these abilities again at a young age. It is rare that people with NPD-C live long enough to be teenagers. Since Charlea was 6 years old, there has been a gradual decline in her abilities. She can barely hold a pencil, forgets people’s names, and repeats herself. Now she can’t remember where things are, and she has developed tremors in her hand. My heart hurts when I see her try to drink a glass of water or draw,” says Danielle Craig, who hopes and prays that there is a cure for her daughter’s illness.