A DEVASTATED family have made an urgent appeal to help raise £2 million in the hopes of finding a cure for their daughter’s rare type of motor neurone disease.
Carina Thurgood, 50, is desperately searching for a way to save her daughter Maddi, 18, who suffers from the fatal illness spastic paraplegia type 15 (SPG15).
The disease is so rare Maddi is the only person in the UK known to suffer from the condition.
It is a rare form of motor neurone disease which affects a person’s limb movements, their ability to breathe, their eyesight and brain functions.
While there is currently no cure, Carina is trying to fund research by Sheffield University scientists to find one.
She said it’s a “ticking time-bomb” as they race to find a cure while Maddi’s condition gets worse every day.
Maddi’s family first noticed there was a problem when she began to limp when she was 14.
After seeing numerous doctors, Maddi was referred to the Great Ormond Street Hospital in London where a brain scan discovered she had a progressive condition but they weren’t able to give an exact diagnosis.
Maddi was finally told she had SPG15 at the age of 15.
Carina, of Toppesfield, near Halstead, said: “It was the first for Great Ormond Street Hospital.
“We were told: ‘We’re really sorry but there’s no treatment for Maddi because it is so rare’.
“On my way from hospital I just kept thinking we’re just going to have to start researching about it.
“Her condition is progressing more and more to the point where we had to get a wheelchair for Maddi.”
Following research and fundraising by her family, Maddi underwent a successful operation in America to help tackle the spasticity in her legs in September.
Carina added: “In no way did it cure her condition. We’re trying to do everything we can to make her life better. We’re just trying to keep her moving.
“We’re targeting the problems that come with the condition because once it happens, you can’t reverse it. Essentially the cells are dying.
“Maddi’s condition is just going to get worse and worse so it’s a really sad situation.
“I need to find a way to help my daughter.
“If a million people donate one pound then that would be huge for us.
“We’re having to fight for this for Maddi’s sake and we desperately need help.
“I’m just a mum who is trying to find a cure for her daughter.”
Carina, her husband Paul, 63, and their eldest daughter Alex, 24, have started a Go Fund Me page which has already collected £400,000 in donations.
The family have also since set up a charity called the Maddi Foundation.
To donate to the appeal, go to www.gofundme.com/f/SavingMaddi.
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