A Belfast teenager dying from the human form of mad cow disease, variant Creutzfeldt-Jakob disease (vCJD), has astonished experts with signs of recovery after being tested with a new drug.
Jonathan Simms (18) is the first person in the world with vCJD to be tested with the drug Pentosan after his father won a High Court ruling in January effectively ordering doctors to give him the previously untested drug.
Since beginning his treatment at home in Belfast in January, Jonathan's condition has stopped deteriorating and to the greater amazement of doctors, he is showing signs of recovery.
"We're obviously very excited in the case of Jonathan. We expected him to be dead by this time," said Mr Stephen Dealler, of Lancaster Royal Infirmary, who was involved in finding out why the drug would work.
"He stopped going downhill initially, and now has improved with no side effects," Mr Dealler told The Irish Times last night.
"Last January, we'd be very lucky if he was alive in one month, now, it's quite the opposite" said Mr Dealler.
" I didn't think we'd see such an effect. He was so far downhill, he was nearly finished, but he has responded remarkably well," he added.
In fact Jonathan's response to the treatment has been so encouraging, plans have been made to treat two other patients in the early stages of the disease within two to three months.
"If we treat people early on we could stop CJD while people can still walk and talk" said the scientist.
Pentosan works by stopping prions from developing in the brain. Prions irritate nerve cells and cause them to die.
The drug is pumped through a tube just under the skin, from the abdomen, up the side of the body to the head where it enters the brain directly.
Mr Dealler paid tribute to the efforts of Jonathan's father, Mr Don Simms.
"He's done really well dealing with officialdom and enforcing the local doctors to go ahead," Mr Dealler said.
Thanks to Jonathan, both a treatment and a test for variant CJD may have been discovered.