A BELFAST man with variant Creutzfeldt-Jakob disease (vCJD), who received experimental treatment, has died 10 years after his illness was first diagnosed.
The family of Jonathan Simms from Highfield, west Belfast, said they were devastated by his death. He was first diagnosed with vCJD in 2001 after initial concerns that the talented young footballer was suffering from multiple sclerosis.
It was not until two years later and after a campaign by his father Don Simms that legal permission was given for him to receive injections of pentosan polysulphate directly into his brain to slow the onslaught of the disease. The drug had been tested on animals but not on humans.
After two years of treatment, doctors were able to report that the degenerative brain condition had stabilised. Pentosan polysulphate is derived from beechwood and has been used in the past to treat cystitis.
Mr Simms said last night that his son had “grown tired” and was unable to fight any more. “How it came about was so sudden, unexpected. We are a family who are left devastated,” he told the BBC. “The times when we did expect it to happen, he fought through it.”
Mr Simms said he would continue to campaign for those suffering with vCJD.
