Family of Kendal girl suffering from rare Duchenne Muscular Dystrophy plans charity fund-raising night (From The Westmorland Gazette)
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Family of Kendal girl suffering from rare Duchenne Muscular Dystrophy plans charity fund-raising night
THE family of a sick child with an extremely rare illness is appealing for help to raise money to fund more research into the debilitating disease.
Ella Dixon, aged seven, is thought to be one of just five girls in the whole country who suffers from Duchenne Muscular Dystrophy (DMD), a condition which could eventually leave her paralysed with muscle and organ wasteage.
The brave youngster, from Kendal, has never climbed a tree or been able to ride a bike and she is under the constant care of doctors in Barrow and Newcastle.
But because the condition is so rare in girls, very little is known about how it will progress.
Now Ella and her parents, Clare and Craig Dixon, are on a mission to pull in the cash for the Muscular Dystrophy Campaign, so that more research can be done — and a cure eventually found.
“It can be a life-limiting illness,” said Mrs Dixon.
“Boys who suffer from it can die quite young and be in a wheelchair young, but with girls they can’t say — they just don’t know.
“Ella can’t ride a bike, she can’t manage the stairs and she falls for no reason.
“But we have no idea how the disease will progress.”
The family has organised a charity night at the Castle Green Hotel, Kendal, in a bid to raise much-needed money.
And they are calling on businesses and locals to donate items that can be used for raffle or auction on the night.
Mrs Dixon, who works at Beale’s department store, which has donated several prizes, said: “The tickets sold out really quickly, they were gone in days.
“But now we’re appealing for items or gifts that can be used either for raffle prizes or for that can be auctioned off.
She explained that brave Ella, a pupil at Heron Hill Primary School, was diagnosed with the disease in 2010.
As a tot she had not learned to walk or crawl when others her age had, and her parents sought medical help when she started nursery.
She was referred to hospital in Barrow before being sent to the Royal Manchester Children’s Hospital, where she was put through a series of tests.
One test finally uncovered the DMD, which is caused by abnormalities in the gene that affects muscle structure.
Now Ella cannot walk far and is often in pain with cramps in her muscles.
She has to wear special boots to keep her leg muscles warm, has physiotherapy daily basis and attends Sandgate Hydrotherapy Pool.
Mrs Dixon said: “The cramps keep her awake at night, especially in the cold weather. The cold weather really affects her. It’s heartbreaking to see and I just hope that they find a cure at some point.”
The family will be hosting their charity night on February 9.
Barclay’s bank has offered to match fund anything raised.
Sarah Wilcox, volunteer fund-raising manager at the Muscular Dystrophy Campaign, said: “Duchenne Muscular Dystrophy affects around 2,500 men and boys in the UK, but the number of young girls thought to have the condition can be counted on one hand.”
Anybody who can donate a prize is asked to contact Mrs Dixon on 07778 814 783.