September 30th, 2016

Race to save teenager with rare disorder

Race to save teenager with rare disorder Race to save teenager with rare disorder
Updated: 4:10 pm, May 07, 2015

“MY daughter has never asked for anything, but I know if she could she would ask for this.”

These were the heart-wrenching words of Wilmcote mum Samantha Barry as she launched a desperate bid to raise £10,000 in two months to pay for potentially lifesaving treatment for her inspirational daughter Ciara.

The 13-year-old suffers from a rare disorder called Rett syndrome which affects the development of the brain and means she is wheelchair-bound and unable to communicate properly.

The Welcombe Hills School pupil has also developed curvature of the spine and mum Samantha needs to raise £10,000 by April to pay for pioneering treatment in Florida to avoid her having to go through an operation in the UK which doctors say she may not survive.

She told The Observer: “She is such an amazing, lovely girl in spite of all she has had to deal with.

“The doctors have told us this is a crucial time because of her age and that she needs treatment before summer to stop it from getting worse.

“In the UK the only operation available is to basically insert a metal rod in her spine but there are very high risks associated with that and we’ve been told she may not even survive it.”

The treament in Florida involves an intensive course to realign the spine and Ciara would then come home with a special chair so the treatment could continue at home.

Samantha, who has two other young children Rhiann and Dylan, has begun a desperate mission with her friend Sarah Pitt to raise the cash needed.

“We really need to get the funding together, I’ve worked out £10,000 will pay for the flights, treatment and the chair,” she continued.

“I can’t bear the thought of Ciara having to go through the alternative because it is so high risk. Even if she survives there is a risk she could suffer further brain damage after the operation.

“Ciara is so placid and her disorder means she can’t really communicate.

“She’s never asked for anything in her life but if she could I know she would ask for this.”

Samantha is studying nutrition after the liquid food she had to give Ciara through her stomach made her ill, so she began to make and blend her own food.

“It just didn’t work,” explained Samantha.

“The food made her ill and she couldn’t keep it down, so I started researching nutrition and making my own meals which I now blend and give to Ciara and the problem went away.

“Eventually I want to be able to help other parents and children who are in the same position.”

To make a donation or find out more visit www.justgiving.com/keepciarawalking or call Samantha on 07425 623682.

Mum Samantha Barry with Ciara and her brother Dylan and sister Rhiann Picture by Jon Mullis 04.015.003.strat.jm1 (www.buyphotos247.com)

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