'Help me stand on my own two feet'

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Saturday, February 14, 2009
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This is SouthWales

WINNING big on Deal Or No Deal was a chance for Rhys Devereaux to turn his life around and help him get back on his feet.

Being able to walk has been the ultimate goal for the 23-year-old after he was left wheelchair-bound by a rare genetic disorder.

He was diagnosed with Friedreich's ataxia — a condition that causes deterioration in the nervous system, resulting in muscle weakness and loss of balance and co-ordination.

Most people end up in wheelchairs within a few years, but Rhys refused to be held back and managed to complete university before being confined to a chair.

NHS treatments did not work for him and he was forced to turn to private help to win his battle to walk again.

But the treatment came at a high price, which was eating through his family's finances.

Then, out of the blue, he won £20,000 on Noel Edmonds's television game show Deal or no Deal to help cover the cost of his treatment at London's Mind Clinic.

The centre offers holistic rehabilitation and counselling. He says he went to the clinic in desperation, after being left "helpless and hopeless" by the support offered on the NHS.

Now the cash lifeline has run out and, with little chance of Health Commission Wales offering him funding to attend the private clinic, Rhys, of Brodawel, Llannon, near Llanelli, has launched an emotional appeal for help.

He said: "My parents have been supportive throughout and my mother, who is retired, was prepared to use her pension on my recovery.

"Fully aware of the financial burden imposed on my parents, I applied to be a contestant on the TV game show Deal or No Deal and was successful.

"Amazingly, I won £20,000, which enabled me to repay my parents for some of the treatment I had already received and relieve the pressure I felt for depriving them of financial security in their retirement."

But with the average cost of his treatment setting his family back in the region of £1,500 per month for around five sessions, Rhys has been left looking for funding elsewhere.

He added: "Unfortunately, although my progress to date has been remarkable, I am going to have to continue this treatment for many more months, maybe years, and so the financial pressures remain.

"My GP has been very supportive and applied on my behalf to the Assembly, but the application was refused as it was not in a position to fund non-NHS treatment."

Rhys was 17 when medics finally diagnosed his condition after initially being misdiagnosed with another genetic disorder.

He was suffering with clumsiness and unsteadiness, along with impaired co-ordination. Meanwhile, he had problems because his ankles were so weak, he had poor posture and his torso was twisted and contorted.

But despite being told most sufferers lose their mobility completely within a few years, he refused to give up his dream of going to Exeter University — graduating in 2006 with a 2:1 in business economics.

A Health Commission Wales spokesman said it could not comment on individual cases, but that it did fund NHS approved services for ataxia in Wales and provide access to approved specialist treatment in England if patients need it.

RHYS Devereaux has spent his quiz show winnings wisely... he has given £20,000 to his mother to reimburse her for the money she has spent on his health care.

Although the young man was delighted to scoop such a fantastic prize on TV’s Deal or No Deal, the 23-year-old wants his mum to have the cash.

Rhys has a rare genetic disorder and the only thing keeping him on his feet is the treatment his family has financed at a private clinic. The treatment is not available on the NHS, so it was left to Rhys to find the money himself.

Without this holistic rehabilitation and counselling, Rhys and his family are convinced the university graduate would now be confined to a wheelchair.

Before attending the Mind clinic in London, Rhys says he was already sinking into depression and questioning whether his life was worth living. It’s safe to say the clinic has transformed him and the physical improvement has left Rhys with a reason to get up in the morning.

The question of health funding is always a thorny one and we all know the NHS doesn’t have a bottomless pot of cash, however for Rhys that is little consolation when he knows the help is out there but he can’t afford it.

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3 Comments

  • Profile image for This is SouthWales

    by Dawn Wooldridge, Essex

    Tuesday, February 24 2009, 2:11PM

    “I have one of the caerebellar ataxias and find it dreadful that this help is out there for those with ataxia, but not accessable unless you fund it privately... I too use a wheelchair & was recently told by a locum GP that I would stand a better chance in life if I could seek pirvate medical care.... unfortunately I am not in a financial position to do this, neither are the vast majority of ataxians... I wish Rhys all the best in his fundraising... but I feel the NHS have a huge lesson to learn...”

  • Profile image for This is SouthWales

    by Charlotte, South Wales

    Tuesday, February 24 2009, 1:58PM

    “I have FA (the same condition Rhys has. I have been diagnosed 13 years) I wish him the best of luck of what he thinks will help him to walk again and to raise the finance. I myself, would jump at any chance to walk again, but as the gentleman above stated there are people worse off financially and I certainly do not have the money to enable me to visit these clinics. Everyone is entitled to their own opinions regarding this and how it does actually work. The part I am mostly confused on is how this does work as there are multiple FA systems, e.g. feet turning in? I would love to have a chat to Rhys to gain a better understanding. Until then I will put my faith in Ataxia UK and the research they undertake to benefit all Ataxia sufferers.”

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    by Mr W.Phillips, Plymouth.

    Monday, February 23 2009, 8:56PM

    “I have Cerebalar Ataxia.(diagnosed over 30 years ago) I wish Rhys all the best but what about the genuinely financialy worse off or those who haven't won £20,000. I personally (based on my principles) would not accept private treatment. N.H.S vs private is simply class distinction.”

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