A SEVEN-year search to find out what was wrong with their little girl has led a couple to an answer any parents would dread – she has an incurable form of childhood dementia.
In 2001 Harborough youngster Lois Peacock was a bright, chatty four-year-old excited to be starting Hallaton Primary School.
Yet as her fellow pupils developed, Lois slowly deteriorated to the point where she is now confined to a wheelchair and could soon be bedridden.
In May, after years of scans and tests to find a diagnosis, her parents Amanda and Roger found out Lois is one of only 74 children in the UK known to have Niemann-Pick C.
The fatal condition, sometimes referred to as ‘Childhood Alzheimer’s’, affects the brain, leading to progressive loss of motor skills, psychological problems and dementia and often killing children before they reach 20.
Now the family wants to raise awareness of the condition to help other people in the same position.
Mrs Peacock (42) said: “The worse thing is there’s no cure, no matter how much we’d like there to be. You have this lovely girl and then all of a sudden she’s taken from you.
“At first everything was fine. It was a normal birth, she walked when she should have, talked when she should have.
“It began when she started school. At the first parents’ evening the teacher said she wasn’t keeping up with the class. At home she’d always been a messy
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eater but we noticed she found a knife and fork difficult to hold.”
Mrs Peacock spoke to a friend who said Lois may have dyspraxia, a neurological condition which impairs children’s ability to develop.
She was placed on a specialist programme of daily exercises which sadly proved unsuccessful.
“One day she started to laugh and just fell over,” said Mrs Peacock.
“I thought’ what’s going on now?’. The doctors said it was probably cataplexy. If she found something amusing she would just drop.”
Lois was given medication to combat the condition and showed signs of improvement but was still making no progress at school and found it increasingly difficult to concentrate.
By the time doctors were finally able to diagnose Niemann-Pick, Lois was experiencing epileptic seizures, had slurred speech and struggled to swallow food.
She left Hallaton School in July last year and is now at Birch Wood special school in Melton, where courses of hydrotherapy, music therapy and massage help her to cope with the disease.
The family is helped by Jackie Imrie, the only clinical nurse in the country who specialises in Niemann-Pick, as well as specialists from the Royal Manchester Children’s Hospital.
They fitted handrails in the house to help cope with her reduced mobility and face the prospect of making her a bedroom downstairs.
Mrs Peacock said: “We used to go to swimming lessons but she wasn’t improving. She used to play tennis but she couldn’t hit the ball properly anymore so we had to stop. We very limited as to what we can do, especially during holidays.
”It’s such a cruel disease.”
Mrs Peacock singled out Hallaton Primary School, NHS staff and Lois’s 14-year-old brother Luke for their support and urged anyone who can help to contact the Niemann-Pick Disease Group charity on 0191 4150693, email email@example.com or visit www.niemannpick.org.uk