Belfast man with vCJD dies after long battle
- 7 March 2011
- From the section Northern Ireland
A Belfast man who suffered variant CJD - the human form of mad cow disease - has died, 10 years after he first became ill.
Jonathan Simms confounded doctors by becoming one of the world's longest survivors of the brain disease.
Jonathan, a talented footballer, first became unwell in May 2001.
Initially, doctors thought he had multiple sclerosis. But Jonathan's illness was later confirmed as vCJD. He was given just months to live.
After a court battle, the family won the right to use the experimental drug pentosan polysulphate in January 2003.
It had not previously been tested on human beings.
At that time, his father, Don Simms said the decision to give their son the drug was a "calculated risk based on 20 years of science".
Speaking after Jonathan's death, Mr Simms said: "How it came about was so sudden, unexpected. We are a family who are left devastated.
"The times when we did expect it to happen, he fought through it.
"However, we feel that he himself had grown tired and was unable to fight any more."
Mr Simms said he would continue to campaign for those suffering vCJD.
"There is still a social stigma. People have to realise that there is a human being at the end of this man-made disease," he said.
"We will continue to spearhead the campaign for those who come in the future. That has been my life and Jonathan would have wanted this.
"What I hope to end is the social stigma attached to vCJD - just like the stigma of HIV Aids - it does not need to be there."
Jonathan's brother, Andrew, said: "The hole in my life is 1,000 times bigger now. He was my John Terry. He was a brilliant footballer, I never had a hero like him in my life."
The first symptoms that Jonathan suffered were that he became a little clumsy and had problems balancing - classic early signs of the prions that cause vCJD to damage the brain.
His family ran a campaign from their Highfield estate home for better treatment for victims.
Jonathan required intensive care in the latter stages of his illness.
He died at his home in the Highfield estate in west Belfast.