As doctors at a Dublin hospital wait for the results of tests on a patient suspected of contracting the human form of BSE, Don Simms has offered his support and advice to the family.
Mr Simms’ son Jonathan, 20, was first diagnosed with the brain disease nearly three years ago, yet he is still alive and has suffered no noticeable side effects from his drug treatment.
The Belfast family, Don, wife Karen and their six children, launched a court battle to allow the young man to be given a particular compound of drugs in use for 40 years to treat inflammation of the bowel.
It took eight months to win the case and by the time the drugs, Polyphosphate Pentosan (PPS), were administered, Jonathan had only days to live.
Remarkably, his condition stabilised.
Tests have been carried out on a man in his 20s being treated in a Dublin hospital. He has shown signs of vCJD, which is linked to the consumption of contaminated beef.
The disease can also be transmitted by blood. The man’s medical records show he has not received a blood transfusion or made a blood donation.
Mr Simms, who has become an expert on vCJD due to his son’s illness, said there were reasonably simple non-invasive tests that can be carried out to confirm whether a person has contracted the disease. He said he would not hesitate to recommend the use of PPS from the earliest stage of the illness.
When the family first heard of it, Jonathan was still talking and walking but by the time the drug was administered he was severely brain damaged and had only days to live.
“He’s very stable now ... it’s now being used worldwide,” said Mr Simms, who has the support of various medical experts in the field and the unequivocal backing of his local GP.
No patient with vCJD has survived as long as Jonathan following diagnosis.
Jonathan has spoken single words and his gag reflexes, the weakening of which led him to choke on his saliva, have improved.
There have been no side effects from the drugs.
PPS is a blood thinning compound injected into the brain via a catheter. In the case of vCJD its role is to attack and stop the production of prions and proteins, an overload of which eats away at the brain’s vital functions. Mr Simms, who is still angry various agencies fought the family’s attempts to have the drug administered, has offered his help and support to the Dublin family.
Mr Simms can be contacted on firstname.lastname@example.org.