We think of dementia as a disease which affects our elderly loved-ones, but young mum Danielle Craig has to watch her daughter suffering from the debilitating effects of the illness.
Her 12-year-old daughter Charlea Armstead is battling an incurable disease that is making her old before her time.
A rare neurological condition – Niemann Pick type C - is robbing the schoolgirl of her memory and mobility, and causing her to suffer many of the other symptoms of dementia, such as incontinence, an inability to swallow and confusion.
Now, Danielle, 29, of Oldham, wants to share her daughter’s incredible bravery in a bid to raise awareness of this devastating ticking time bomb.
When Charlea was born, parents Mark and Danielle were delighted to have had a seemingly healthy little girl. But two weeks later they were back in hospital with their newborn after she developed jaundice and a swollen stomach.
"Doctors wanted to test her for a neurological disease – Niemann Pick Type C,’ Danielle 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.
It causes an excess of cholesterol to build up in cells which affect the brain and other organs. There are thought to be just 500 cases of NPD-C worldwide.
Unbeknownst to Danielle, both she and Mark carried the gene responsible for the rare and debilitating 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," Danielle explains.
"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."
Defiant, Danielle raised her daughter just like any other little girl. And Charlea defied the odds learning to talk at 12 months, walk 3 months later.
She thrived like any other child her age. It was only when she started primary school when at four that teachers noted that she was developmentally delayed.
At the age of six she became quite uncoordinated, had trouble holding a pen and showed frequent signs of confusion.
By then Danielle and Mark had split and she was pregnant with new partner Shane Ward, 33. She explains: "Charlea would spend the weekend at Mark’s then come home and call me ‘Daddy’ for a few days. Or she’d tell me a story and repeat it later on. Most weeks she asked me what day it was."
Charlea also developed an associated condition called cartoplexy, which means she collapses to the floor when she laughs. The young family found this element of the condition especially difficult as, like most young girls, Charlea loved to giggle over her favourite tv shows or share a joke with friends.
"What people must think hearing me tell my daughter not to laugh, I can only wonder," she says. "It was at this point that I knew that the disease was really taking hold. After that Charlea’s decline became much quicker. She began forgetting people's names and repeating herself."
"Now she can’t remember where things are and has developed a tremor in her hands. My heart aches when I see them shaking as she drinks a glass of water or tries to draw or write."
At the age of nine she became incontinent, doctors diagnosed Crohn's disease – another related condition – and Charlea lost a lot of weight and cruelly began being bullied at school.
In the last few months Charlea has lost the ability to swallow independently. She now faces a having a gastrostomy fitted.
It’s now Charlie’s younger brother Tyler, 6, who is the more advanced sibling.
Danielle says: "He has overtaken her in reading, writing and drawing but is forever trying to help her with these basic skills. He always makes her sit down before he entertains her with his jokes.
"When I asked him what he wanted to be when he grew up he said 'A doctor! So I can fix Charlea'."
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Brave Charlea is determined to live as normal life as possible. She started at a special needs secondary school last September and is looking forward to going into year 8 with all her friends. Sadly, the disease will continue to strip Charlea of her skills until it takes her life.
"We don't know when this cruel disease will take Charlea. We were told it could be two years or ten. Well, Charlea is twelve and she's still fighting. She never stops smiling.
"She has big dreams for a wonderful life. I just hope a cure is found soon so all her wishes come true," Danielle says.
What is NP-C?
Niemann-Pick Type C patients have too much cholesterol or other fatty acids in their cells, which can affect the brain and other organs, leading to progressive intellectual decline, loss of motor skills, seizures and dementia. Speech can become slurred and swallowing problems may develop. The rate at which the disease progresses varies greatly between patients; children who develop neurological symptoms in early childhood are thought to have a more aggressive form of the disease, others may remain symptom free for many years. Currently 82 people are affected by NP-C. It hit's one in 750,000.
Jackie Imrie, a nursing consultant with the Niemann-Pick Disease Group says:
"The disease affects children and young adults and although it may be detected just after birth, it is more frequently diagnosed later in childhood, having taken many years of investigations and often increasing neurological symptoms, before getting the answer.
“Due to the wide variation in symptoms, a child may be perfectly well when diagnosed except for prolonged baby jaundice or a big stomach.This increases the anxiety of parents who are already absolutely devastated to learn that their child has a life-limiting disorder.
"On the other hand the child may have been experiencing worsening symptoms over years, starting with not keeping up with friends at school or forgetting what they have learnt, or being clumsy and falling ever more frequently. Perhaps their speech is affected – slow or slurred – or swallowing food or liquid causes choking and coughing."
