By Olivia Kelleher
The mother of a toddler who suffers from intractable seizures is pleading with the "invisible decision makers" in the Health Products Regulatory Authority (HPRA), to legalise medicinal cannabis as a matter of urgency.
Mother of one, Noreen O'Neill, who lives in Wilton in Cork has a two-year-old son, Michael, who she says has gone from "death's door" to riding a horse since he started taking CBD oil the legal less potent form of medicinal cannabis. However, it is anticipated that he will require the THC form of medicinal cannabis which is not legal in this country.
Noreen says prior to giving Michael medicinal cannabis he had lost his ability to sit up, reach, roll, smile, or lift his arms, legs or head. The toddler was unable to swallow and was fed through his nose after nine pharmaceutical treatments had failed him.
Ms O'Neill said that Michael had such a violent reaction to one pharma drug that he went in to respiratory distress on a flight home from New York last year.
She said: "The United Airlines flight on which we were travelling had to be diverted to Newfoundland, Canada, as Michael went into respiratory distress half an hour into the flight. While Michael’s seizures had been very good on this drug, he had been silently aspirating his milk, as the muscles in his swallow phase were limp due to the drug and he was unable to close off his airway."
Noreen said the life of her son was saved because by divine intervention the plane was like a "flying hospital."
"A GP from Limerick, Dr Marina O’Malley, her husband Paddy, a surgeon, an American paediatric nurse, and an American intensive care doctor along with his colleagues were sitting in a ring around us, and directly behind my seat, an asthmatic man, whose inhaler they used along with a plastic bag as a makeshift mask, to open Michael’s airway."
"I don’t remember much of the detail other than retching at what was happening, screaming at the cabin crew to release the medical bag and land the plane. We landed in a town called Gander, I didn’t even know what country we were in until we were sworn into Canada on the steps of the plane.
"Paramedics whipped Michael off the plane, and my sister and I were escorted by the highway patrol police after the ambulance to the local hospital. It was chaos."
Michael was admitted to hospital on January 3, 2018, to begin anti-convulsant number ten. He was averaging up to 15 seizures a day. Noreen decided to personally administer CBD oil to him January 5 and he was seizure free three days later.
She said: "I told Minister Harris I believed CBD would lead him to have this tube removed before his second birthday on August 31st, and on August 23rd last, he was officially extubated. He has not had a single acute
hospital admission since his first dose. While this, along with the removal of his feeding tube, has saved the HSE multiple thousands, the financial cost to me as his sole-carer, has been colossal.
"Thousands of euros to date I have dispensed on private therapy to retrieve what that year cost him developmentally, not to mention the cost of meeting his ever-increasing dose of CBD oil, as he grows. This currently stands at approximately €400 per month. "
Noreen says several families who contacted her after she highlighted Michael's experience of CBD oil are now living life without seizures.
She said: "These were children who had been blue-lighted multiple times to hospitals and spent months in hospital beds, enduring ferocious and unrelenting seizures and drug-induced side-effects.
"We demand country-wide access to medicinal cannabis through our doctors on the Long-Term Illness Scheme and General Medical Services Scheme. We demand that no further delay be allowed by logistical negotiations between the HPRA and potential pharmaceutical distributors here."
She maintains that ‘standard anti-convulsant medications’ and ‘standard anti-emetic regimens’ should be removed from any and all qualifying requirements for access to medicinal cannabis and that such decisions be taken between doctor and patient, not state officials.
She said: "I have said in previous correspondence to Minister Harris, and now I say it to each official of the HPRA; there will be no let-up in our efforts to secure this life-changing medicine for our children. Our
backs are to the wall.
"We have tried and failed every other option. We cannot and will not stop pursuing every avenue to obtain what our children need to stay alive."
Ms O'Neill said that Michael is at risk of developmental delays unless they are granted a licence for THC to treat his condition which is called bilateral frontal polymicrogyric. It involves him having too many folds on the frontal lobes of his brain.
Noreen has taken leave from her job as a teacher in Kerry in order to care full time for her son. She and Michael moved to Kerry so that they could be closer to CUH in the event of an emergency.
She has set up a petition seeking the legalisation of medicinal cannabis.
The Department of Health has previously said that the decision to prescribe or not prescribe any treatment, including cannabis treatment, for an individual patient is strictly a decision for the treating clinician, in consultation with their patient and that Minister for Health has no role in this clinical decision-making process.
Noreen O'Neill with her son Michael. Pic: Denis Minihane.
