More than 9,000 people are rallying behind a mother’s plea for the Health Ministry to allow her son to use THC to stop his seizures.
A mother whose toddler son suffers from a rare neurological condition is imploring the Irish Health Minister Simon Harris to grant them the license to use THC as treatment for his seizures.
Michael O’Neill, who will be turning two years old this summer, has bilateral frontal polymicrogyria. According to his mum, Noreen O’Neill, Michael started suffering from seizures when he was just three months old, and, at one stage, was having up to 20 seizures a day.
In a letter she penned to Harris last month, Noreen explained that she started giving Michael cannabidiol or CBD oil in January and was therefore seizure-free for four months. The CBD oil was obtained legally in Ireland.
However, Noreen said that the 18-month-old boy now needs the more potent THC because there has been a sudden escalation in his seizures recently. In her letter, she pointed out that THC will have to be administered along with CBD to keep Michael seizure-free.
THC or tetrahydrocannabinol is the main psychoactive ingredient found in cannabis. Patients in Ireland who wish to use cannabis products in the treatment of any medical condition need to get the case-by-case approval of the Minister for Health, which is a long and painstaking process.
(Photo credit Noreen O’Neill)
Life before CBD oil
Noreen wrote that aside from the rare neurological condition, the boy also has global development delay. In the months that followed the start of his seizures and his diagnosis, all of the milestones that Michael had previously achieved disappeared, including his smiles. This, Noreen said, was “soul destroying.”
Noreen also described how time-consuming and difficult feeding had become for Michael and her.
In her account, Noreen said that the boy had been fitted with a feeding tube, but this took his ability to swallow his own saliva, which caused a lot of drooling and soaking through towels. She was told that while the tube protected him from aspirating his milk, it could not protect him from aspirating his saliva. Over time, this would take a toll on his lungs and destroy them beyond repair, and this would ultimately cost him his life.
She would spend a total of six hours every day on feeding Michael, with each of the four feedings taking one and a half hours. She also had to suction him every so often so he would not choke on his own spit or on his own vomit.
Noreen also recounted that she brought the boy to developmental therapy sessions.
Her life, she said, became a series of trips to the hospital, to the pharmacy, to therapy, as well as trips for feeding equipment and frantic runs to A&E. She was “living in a constant state of fight or flight” and was always on edge, watching, listening, analyzing, and having an adrenaline rush the entire day every day.
Noreen also pointed out that before they tried CBD oil, Michael’s doctors had tried 10 different medications and all had failed to varying degrees.
How CBD oil improved Michael’s condition
According to Noreen, the frequeny of Michael’s seizures lessened by half the day after he was first given CBD oil. On the second day, the number of seizures again dropped to half. On the third day, the seizures stopped altogether.
She also eventually stopped bringing the suction machine when they would go out for a walk and no longer had to check on him every two minutes.
She described the effect of CBD oil as “life-changing.”
In her letter, Noreen is asking Harris to license cannabis-based products in the same way as existing prescription medication.
Currently, the Department of Health has established a ‘Cannabis for Medical Use Access Programme’ that allows patients access to cannabis-based treatments provided that:
- they are suffering from certain qualifying conditions,
- are under the care of a medical consultant, and
- have failed to respond to standard treatments.
People show support
Noreen’s letter went viral on social media. The people’s response to it has been phenomenal, she said in an interview with the Irish Examiner.
According to her, people in similar situations from across the country and even from as far as Canada contacted her for advice. People also asked her where they can get CBD oil and how to administer it.
Noreen has decided to start a petition calling for medical cannabis legalization. As of today, Noreen has received nearly 10,000 signatures.