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Doctors who have examined Jonathan Simms, 18, say that there has been a marked turnaround in his health since he became the first person to take a course of drugs injected directly into his brain.
The controversial treatment, which was permitted only after a lengthy legal battle by Jonathan’s family, has been called a first positive step in tackling variant Creutzfeldt-Jakob disease (vCJD). Stephen Dealler, a microbiologist specialising in vCJD, who saw Jonathan a month ago, described the improvement in the teenager’s condition as “incontestable”.
“Before the treatment Jonathan was clearly deteriorating markedly,” Dr Dealler said.
“But now he is no longer going downhill and certain factors are showing marked improvements.”
Mr Simms, from Belfast, had vCJD diagnosed in December 2001. He is thought to have contracted it from eating BSE-infected meat. At the time he was studying for his A levels and was on the books of one of the city’s top semi-professional football teams.
With doctors giving him less than a year to live, his parents embarked on a legal fight to allow their son to have a course of pentosan polysulphate (PPS), an experimental blood-thinning drug, injected into his brain.
Although tests have yet to confirm the efficacy of the drug, the teenager has shown several small signs of improvement, including lowered blood pressure and heart rate and a weight gain of almost two stone. He has also recovered an ability to swallow and a greater level of response.
Don Simms, Jonathan’s father, said that an interminably bleak future had brightened.
“By the law of averages Jonathan should be dead. We have seen small but significant changes in Jonathan’s condition. His swallow has got stronger and his gag reflex has strengthened. Before, Jonathan required suction to remove his saliva so that he didn’t choke, but now he can cough it away and swallow.
The treatment, which involves the staggered injection of minute amounts of PPS every day, is administered through a catheter and a tiny reservoir introduced to Jonathan’s skull.
His progress is to be shown in a BBC documentary, Real Story, this week. Mr Simms and his wife, Karen, won the right for their son to be given the infusions after High Court hearings in London and Belfast. The drug has been shown to slow the disease in animals.
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