Jonathan Simms from Belfast has died of variant CJD. He had survived 10 years with the disease and his case has been widely discussed in the media.
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.”
“There have been 173 cases of variant Creutzfeldt-Jakob disease (vCJD) in the UK, as of 5 July 2010, as a result of the bovine spongiform encephalopathy epidemic.” de Marco MF, Linehan J, Gill ON, Clewley JP, Brandner S. Large-scale immunohistochemical examination for lymphoreticular prion protein in tonsil specimens collected in Britain. J Pathol. 2010 Dec;222(4):380-7.