A Belfast teenager dying from the human form of mad cow disease has experienced "small but significant" improvements since receiving an experimental new drug, his father revealed yesterday.
Mr Jonathan Simms (19) is the first person to have pentosan polysulphate (PPS) - commonly used to treat cystitis - injected into his brain in an attempt to slow the damage caused by variant CJD.
His progress was the subject of an international medical conference in Belfast yesterday to which scientists and neurologists from as far away as Japan had travelled.
Addressing the meeting, the teenager's GP, Dr Mark McClean, said more of Mr Simms' brain functions could have been retained if his family had not endured a lengthy court battle to allow the treatment.
"It is extremely unfortunate that we waited for eight months before the treatment was given, during that time he deteriorated markedly. If he had received the drug earlier in this disease then maybe the brain deterioration would have been halted."
The patient's father, Mr Don Simms, who organised the conference, said he would not want other families who wished to use the compound "to have to jump the same hurdles as we did."
The family won the right to have the drug administered after the High Court in London ruled it was both lawful and in the teenager's best interests. As the patient was an adult but incapable of giving consent to treatment there was a question over whether he should be used as a "human guinea pig".
Of his son's progress, Mr Simms said, "he's not dead, that's the most significant thing. His swallow has increased, so that he can deal with his own secretion of saliva, which is a big thing for CJD sufferers.
"He's living 10 months longer than the average. I was told he had a year by two experts, in two different countries," said Mr Simms.
Dr McClean added: "if only the condition had been stopped at an earlier stage, Jonathan would have retained more brain functions. If I was diagnosed today with CJD, I would ensure I received this treatment as soon as humanly possible.
"That is why we are having an international medical conference here today. This is big news and we should shout it from the rooftops."
The teenager, an A-Level student and promising international schoolboy footballer, was struck down by the disease - which is fatal and for which there is no cure - two years ago.
(Additional reporting - PA)
