FRIENDS and neighbours of a Newport man with a crippling condition are launching a campaign so he receives vital treatment.
As reported previously, 34-year-old Simon Henson, of Bishpool, suffers from dystonia, a condition that has left the former fitness instructor and keen rugby player unable to work.
He suffers from painful spasms and a permanently twisted neck. But Health Commission Wales turned down his request to fund a pioneering brain operation at an English hospital.
They said the deep brain stimulation offered by Professor Tipu Aziz at Radcliffe Hospital, Oxford, costing £25,000, was "unproven" on the condition, a claim slammed as "ridiculous" by Prof Aziz.
Now neighbour Wendy Watkins and friend Claire Hammett are planning a fundraising drive to raise enough cash to pay for the procedure, as well as a petition to put pressure on HCW.
Mother of two Wendy, 42, said: "I'm a very good friend of Simon and very annoyed by the situation, considering what he's had to go through.
"It's a very small amount of money to help him get on with his life. "He's a cracking lad and doesn't deserve to go through this. "I visit every day and I've seen him getting worse. It kills me to see him in so much pain."
Wendy said they had no firm fundraising plans but hoped to hold raffles, street collections and possibly a Calendar Girls-style calendar with some friends.
Mum of three Claire Hammett 36, of Ringland Hill, said: "We are all upset about the condition Simon is in. We've seen his deterioration. "There's proof the operation works.
"We are willing to stand in town and get signatures. We'll explain to everyone why he needs this operation."
Simon's plight has been backed by Gwent politicians, including Newport East AM and Assembly Deputy Health Minister John Griffiths, and South Wales East AM William Graham.
Both have written to Assembly Health Minister Dr Brian Gibbons. If HCW change their minds and agree to fund the procedure, the two friends say they will donate any cash raised to others with the condition. Mr Henson said: "It's nice there are people out there who care and understand.
"Since the Argus article everyone has been saying how disgusted they are.
"I hope lots of people will sign the petition and put the pressure on." Mum Val Henson said: "Wendy has been a good friend to Simon and has always been there for him. We're delighted she and Claire are helping us."
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