Glimmer of hope for brave Ellie
By Rachel RicksTHE family of a toddler suffering from a rare disorder are appealing for funds to pay for her to receive specialist treatment at the famous Peto Institute.
By Rachel Ricks
THE family of a toddler suffering from a rare disorder are appealing for funds to pay for her to receive specialist treatment at the famous Peto Institute.
Two-year-old Ellie Perryman was diagnosed with glutaric aciduria type 1, a genetic disorder that means her body has difficulty breaking down protein.
Ellie is receiving physiotherapy to help strengthen her muscles because she currently she cannot sit up and does not have control of her limbs.
Her mother, Caroline Mooney, of Holland-on-Sea, said: “She's got over the worst, she's very determined - definitely a fighter.”
Ellie first became ill five months after she was born after contracting a chest infection. However, she was unable to shake it off, despite courses of antibiotics, and became increasingly poorly.
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She was admitted to Colchester General Hospital in March 2002 before being transferred to Addenbrooke's Hospital in Cambridge, where the genetic disorder was diagnosed.
There are fewer than 50 known cases of the incurable genetic condition in the UK and Ellie will need support for the rest of her life.
The toddler currently attends Addenbrooke's Hospital for treatment every six months and Ms Money is hoping to get her daughter to the Peto Institute in Hungary in the New Year.
“It has been suggested that Ellie could be greatly helped by attending a course at the renowned Peto Institute who specialise in illnesses such as Ellie's,” she said.
“Her doctors and advisers are confident that a course at Peto could benefit her. I would be happy for her to come out of it and be able to sit up.”
Ellie has an assessment in London at the end of this month to see what treatment the institute can offer her.
Ms Money understands the treatment could cost about £4,000 and fundraising has started to pay for Ellie to go to Hungary.
A show, Elliething Goes, will be staged at the Westcliff Theatre, Clacton, on November 30 and organiser, Irene Palmer, said: “All of the money raised will go towards sending Ellie to the Peto Institute for treatment to improve her little life”
Tickets priced £5 for adults and £4.50 for pensioners and children are available at the theatre or on 01255 433344.