Family’s new hope as son with CJD no longer classed terminally ill

THE longest-surviving victim of ‘mad cow disease’ is no longer considered terminally ill, carers in Belfast have decided.

Jonathan Simms, aged 19, was diagnosed with variant CJD in May 2001 after the talented footballer had problems balancing, and doctors believed he had not long to live.

But his family fought a lengthy and costly legal battle to allow him to be treated with a controversial drug, pentosan polysulphate, which had not been tested on humans.

He began a course of treatment almost two years ago. Carers specialising in looking after the terminally ill are pulling out.

At the family home in North Belfast last night, Jonathan's father Don said: "It doesn't mean that he is going to get better but they think that he is not now on the brink of death. Jonathan has survived far longer than any other CJD victim and it has to be because of the drug. There seems to be no other explanation.

"Just over a year ago he began to show some small signs of improvement.

"He was able to recognise his family and girlfriend and he was able to communicate to some degree like indicating to us what he wanted to see on TV.

"That has remained stable since then but, to us, that gives us hope.

"He hasn't got any worse and he is still alive.

"We don't want to give false hopes to anyone else who might be wanting to try this drug.

"But we were told that Jonathan might be dead in hours so every minute that we have him with us is a bonus. Without the drug, there was a 100% certainty that Jonathan would not be here today. If we are ever shown that pentosan was causing severe pain and stress we would have to take him off that compound.

"We would have to kiss him and let him go but, thankfully, that is not the case at the moment and we still have our son."

Mr Simms, who gave up work to run the legal campaign and look after his son, said: "We held a meeting of those responsible for his care in the community because we had to bring in outside services to allow us to get some sleep.

"One of the agencies, the hospice, has been long gone because he did not meet their criteria.

"The other agency Marie Curie deals with patients in their last six or eight weeks are now pulling out.

"The general consensus is that Jonathan Simms is no longer terminally ill he is no longer on the last days or weeks of his life. We hope they are right."