The mother of a toddler who suffers from intractable seizures is travelling to Barcelona next week in order to obtain the THC form of medicinal cannabis as she fears that his condition will "nosedive" at Christmas.
Noreen O'Neill, mother of two-year-old Michael, said that her son is currently taking CBD oil. However, he is at the maximum dosage for his body weight. She is concerned that he will go downhill over Christmas and that doctors won't be able to do anything to save him if he presents at hospital.
Michael was on 10 pharmaceutical medications before he was 16 months old, all of which failed. Noreen says prior to taking CBD oil Michael was unable to sit up, reach, roll smile or lift his arms, legs or head. He was also without the ability to swallow and was fed through his nose.
Ms O'Neill, who lives in Wilton in Cork, is travelling to Barcelona on Monday to meet with consultants who have seen Michael's medical files and have agreed to give him the medication. Noreen says she is going public on her journey as she wants the process to be above board.
"I don't want to sneak around. They can stop me if they like. There is nowhere to go from here," she said. "I have been to three neurologists for Michael and they have all refused (to prescribe THC). I have tried all the medications prescribed to him. None of them worked and they all had side effects. We will be home in Kerry for Christmas and I can't have Michael's condition going downhill without having something to give him. If he does nosedive the hospital can't do anything for him. I need to have the THC in my hand to give to him."
Noreen says Michael was at "death's door" when she first started giving him CBD oil last January. Now he eats independently and has even managed to go horse riding. However, she stresses it is getting to the point where he will need the more potent form of medicinal cannabis THC which is not legal in this country.
Prior to starting CBD oil Michael nearly lost his life on a flight home from New York. The flight had been diverted to Newfoundland in Canada as Michael went in to respiratory distress. The pharmaceutical medication prescribed to him had helped his seizures. However he had been silently aspirating his milk, as the muscles in his swallow phase were limp due to the drug. This resulted in him being unable to close off his airway.
Michael was admitted to hospital on January 3 of this year to begin anti-convulsant number ten. He was averaging up to 15 seizures a day.
Noreen decided to personally administer CBD oil to him on January 5 and he was seizure-free three days later. He has not had any acute hospital admissions since his first dose.
Noreen says she is devastated by the trauma families are going through as they attempt to get licences for medicinal cannabis for their children.
"I have had parents coming to me whose children are having 70 seizures a day. The family are in an awful way. What do you say? The clinic in Barcelona are choc a block with people like me coming. I am going to film a bit and write a blog as I travel from Dublin Airport on Monday and back on Wednesday."
Noreen is demanding 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. 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."
Ms O'Neill says 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 Cork so that they could be closer to CUH in the event of an emergency.
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.
In the Dail, Solidarity TD Mick Barry during Leaders' Questions raised the case of Noreen O'Neill and her forthcoming trip to Barcelona on Monday to obtain CBD oil, which has aided her son who has bilateral frontal polymicrogyria, a drug-resistant epilepsy.
He asked Tanaiste Simon Coveney did he feel any sense of shame that he is a Minister in a Government which forces Irish women to go abroad for healthcare for their children?
In response, Mr Coveney said an expert reference group has drawn up operational, clinical and practice guidelines for healthcare professionals treating patients through the programme and has advised that cannabis oils should be used for the purpose of achieving accuracy and consistency of dosage for patients.
The Minister for Health Simon Harris has shown more than willingness to facilitate the licensing for that on application, he said.
“Only 12 applications for import licences have been made and they have all been granted,” he said.