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From: TSS ()
Subject: Belfast vCJD sufferer defying odds ...thanks to radical treatment
Date: August 31, 2005 at 7:54 am PST

Belfast vCJD sufferer defying odds ...thanks to radical treatment

By Ashleigh Wallace

31 August 2005
A Belfast man who became the first person to undergo radical treatment for the fatal vCJD disease is continuing to defy medical odds, his father has revealed.

In October 2001 a teenage Jonathan Simms was given just 12 months to live. He celebrated his 21st birthday in June, thanks to a battle by his family.

They vowed they would do everything to try and save their son and after a lengthy court case, won the right to have pentosan polysulphate (PPS) infused into his brain.

Jonathan is thought to be one of the longest-surviving vCJD sufferers.

Jonathan's father, Don, said his son's condition has improved to the point where he is no longer considered to be terminally ill.

Mr Simms also expressed his thanks to the family of 30-year-old Belfast man Maurice Callaghan, who died from vCJD in 1995.

He said: "The original support of the Callaghan family helped us to fight this.

"Jonathan turned 21 on June 1. But when you look back to June 2 in 2002, we were told that he had no more than a couple of hours to live.

"We have watched Jonathan battle every day for life and he is now extremely stable - so much so that his GP no longer considers him to be terminally ill."

Mr Simms gave a cautious welcome to news that American scientists have devised a blood test which could identify the rogue proteins which cause BSE in cows, of which vCJD is the human equivalent.

The scientists - led by Prof Soto - believe the screening could protect those receiving blood transfusions and organ transplants. The research has only been used on animals.

Mr Simms said: "Professor Soto is well respected within the world of prion disease but he freely admits there is a long way to go with his method.

"We took a calculated risk with Jonathan's PPS treatment as it has only been used on animals. Just like Professor Soto, we are in uncharted waters."


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