Belfast Telegraph

Belfast vCJD victim loses 10-year fight for life

A young man from Belfast who was the longest surviving victim of the human form of CJD has lost his brave 10-year battle for survival.

Former Glentoran youth player Jonathan Simms (26), from the Shankill area of west Belfast, died on Saturday night.

Following his summer 2001 diagnosis Jonathan’s devoted father Don became an expert on the disease and took on the medical establishment in a race against time to save his son.

In a landmark ruling in 2003, Don and Karen Simms won the right to ensure their eldest son was allowed a controversial treatment with a drug called Pentosan polisulfate, which is directly injected into the brain.

Most people diagnosed with vCJD live for no longer than 14 months.

In an interview with this newspaper at Christmas, Don said: “It isn’t a cure but it has improved Jonathan’s life. If other people ask when should they start on Pentosan, I say ‘yesterday’.

“There are statistics and politics, but there is also the human face of vCJD.”

Mr Simms was also clear as to who he blamed for the neurological disorder making the jump from cattle to humans in the early 1990s.

“Margaret Thatcher is the one who deregulated animal feed and when we went against nature, turning cows which are herbivores into carnivores, this sinister disease was the result.”

Jonathan’s heartbroken family, including his six siblings and grandfather Victor, will now have to come to terms with the loss of the loved-one they have cared for around the clock since he became ill.

Online tributes have poured in for the 6ft 4ins Belfast man, who had showed promise as a footballer and had plans to study graphic design.

A statement from the Irish League supporters’ website said: “Thoughts and prayers are with the family at this very sad time.”

The number of UK deaths from vCJD now stands at 171.

Predictions regarding the number of future cases are uncertain.

Background

Creutzfeldt-Jakob Diease (CJD) is a rare degenerative and terminal brain disease in which unnatural prions or proteins form and incapacitate sufferers. When Jonathan Simms was diagnosed with human variant CJD in 2001, his neurologist told his parents their son was unlucky enough to be “one in a million”. The number of UK deaths from vCJD now stands at 171.

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