Courage of the 12-year-old girl fighting dementia

Like many girls her age, 12-year-old Charlea Armstead dreams of being a ballerina.

She is seldom happier than when she’s dancing around to her favourite pop star Justin Bieber, or cuddling up with her mother on the sofa watching a DVD.

But despite her tender years and lust for life, the smiling schoolgirl is battling the debilitating effects of dementia, a disease more commonly associated with the elderly.

Her very rare neurological condition, Niemann-Pick Type C, is making her old before her time. 

It is gradually robbing her of memory and mobility, and causing her to suffer other indignities such as incontinence and confusion. There is currently no cure.

Yesterday her 29-year-old mother Danielle Craig, from Oldham, told of her daughter’s incredible bravery in a bid to raise awareness of the degenerative condition.

‘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 never stops smiling,’ she said.

‘She has big dreams for a wonderful life. I just hope a cure is found soon so all her wishes come true.’

Charlea was born seemingly healthy, but at two weeks old she had to go to hospital after developing jaundice and a swollen stomach. Doctors then tested her for Niemann-Pick.

Miss Craig said: ‘The condition is so rare that a skin graft was taken from her arm and sent for analysis to France. It was six months before we got the devastating results.’

Charlea was eventually diagnosed as one of only 82 people who currently have the disease in the UK; there are thought to be just 500 cases worldwide.

Unbeknown to Miss Craig, both she and Charlea’s father Mark Armstead carried the gene responsible for the disease.

‘We were told she may never walk or talk properly and if she did she would lose these skills at an early age. Rarely do people with NPD-C live into their teens,’ she said.

I remember feeling utterly stunned that I might not see my baby girl grow up, but after going through a mix of emotions I decided to get on with life and raise Charlea as if she had a whole future ahead of her.’

The condition causes an excess of cholesterol to build up in cells which affect the brain and other organs.

But Charlea defied the odds, learning to talk at 12 months, and walk three months later.

However, at the age of six she became quite unco-ordinated, had trouble holding a pen and showed frequent signs of confusion. 

Nevertheless, she still managed to join professional ballet dancers on stage at a rehearsal of Swan Lake in Manchester, during a special day out arranged by the Make A Wish Foundation in 2009.

As the disease took hold, Charlea also developed an associated condition called cartoplexy, which means she collapses to the floor when she laughs.

Charlea’s younger brother Tyler, seven, has overtaken her in reading, writing and drawing – but Miss Craig said he tries to help her with the basic skills.

‘When I asked him what he wanted to be when he grew up he said, “A doctor! So I can fix Charlea”,’ she added.