Crusading mother seeking cannabis oil licence for son after three-decade fight
A desperate search by a Belfast family to get treatment for their severely epileptic son has taken them to specialists in New York, the Dominican Republic and Barcelona. After accessing cannabis oil abroad, they now want a licence to allow doctors to prescribe the drug at home. Health correspondent Seanín Graham met Jean Kelly, a mother who has been relentless in trying to give 'her boy' a quality of life.
MOTION Pictures, the seventh track on Neil Young's 1974 album On the Beach, was the only thing that would soothe Deaglan Kelly as he battled horrific seizures as a baby.
Thirty-one years on, the severely epileptic Belfast man, who cannot speak, still gets enormous comfort from the song his parents played on a battered cassette tape as they travelled the world searching for treatment.
Jean and Seamus Kelly, who are both 65, have remortgaged their home, fundraised tens of thousands of pounds and journeyed as far as the Dominican Republic where Deaglan received stem cell treatment over a decade ago - but which only provided short-term relief.
The couple, who have two older children, Seamus (45) and Nicola (41), have also gone to New York for specialist care, which led to massive improvements albeit temporary ones.
"From he was 11 weeks old, he started having convulsions. Doctors in Belfast tried every drug but they still couldn't get his seizures under control, they were even injecting into his brain. It was horrific," Mrs Kelly said.
"He was in and out of hospital with medication after medication and his little brain was getting more clouded, it couldn't develop. For me it was like an adult having a stroke - except this was a baby.
"As he grew up, the seizures became worse. He had no sense of danger and wore a helmet to protect himself as his teeth were getting knocked out and he was getting black eyes. His main comfort was music and a particular Neil Young song - we couldn't go anywhere without it.
"I began to do some research when the web came along and when he was 11 years old we took him to King's College hospital in London. A fantastic neurosurgeon performed a procedure on his brain and he was a bright as a button. The seizures stopped - but then they came back."
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Just over a year ago, the west Belfast couple began researching the benefits of cannabis oil following the high-profile case of Co Tyrone boy Billy Caldwell, who was granted an emergency licence for the treatment last month.
The Kelly family were recommended a clinic in Barcelona which assessed Deaglan via Skype and sold a legal form of the drug.
However, they also began to access the illegal form of the oil - containing small concentrations of THC, the psychoactive active of cannabis - from abroad.
While the medication had a "dramatic" effect on the Belfast man, his parents were concerned about administering the correct dosage and wanted a doctor to prescribe it.
The cost of the cannabis oil also sky-rocketed, with the Kellys spending more than £500 a month.
"Deaglan became much more calmer, but not in a sedated sense as he was also really alert and more focussed. He was able to sleep better," Mrs Kelly said.
"Previously, the cocktail of heavy, sedative drugs he was on just made him comatose. He wouldn't let you touch him and would become distressed. But with the cannabis oil he became much more sociable. Deaglan is very loving and also has a cheeky side. You could see how much better he was.
"We've always had an open relationship with Deaglan's consultant neurologist and told him what we were doing. He was very sympathetic but said he couldn't do anything, his hands were tied as the cannabis-based medication we wanted wasn't licensed."
Earlier this month, seven-year-old Sophia Gibson from Newtownards, who suffers from a rare form of epilepsy, became the first person in Northern Ireland to receive a long-term licence for medicinal cannabis containing THC.
The Co Down girl's family had lobbied the Department of Health and Home Office for over 18 months and travelled to Holland in April where Sophia was legally prescribed medicinal cannabis, which significantly reduced her seizures.
A licence for Sophia was granted following an application to an 'expert panel' of doctors set up by the British government last month.
Following the publicity around the Caldwell and Gibson cases, the Kelly family asked if a similar request could be made to the panel.
Deaglan's condition has severely deteriorated recently, due to his cannabis oil dosage being severely reduced.
A week ago the couple received a letter from the Belfast health trust, which said an application could not be made to the expert panel due to its strict criteria - which deems that all other drug treatments must be exhausted before seeking cannabis-based drugs.
It acknowledged that Deaglan has "tried most anti-epilepsy drugs" but suggested there are four remaining medications he has not received.
The letter added that a pharmaceutical company could be contacted about a legal cannabis-based oil that can be prescribed - but does not contain THC.
For Mrs Kelly, the trust's failure to put forward an application to the Home Office after their 30-year fight to give their son a better quality of life has come as a major blow.
"I am really happy for the two young children and their families who can legally access the cannabis oil," she said.
"But we have worked so hard to get Deaglan the right care for all these years as we know the epilepsy and the seizures rob him of life. He has suffered in silence for all this time as we have tried to self-manage him - which at times has been detrimental to our lives.
"No drug has worked for our boy but now we know there is a treatment out there that can help him - we just want that application to be made. We are devastated by the trust's response."