Noreen O’Neill said she will overcome whatever barriers the State puts in her way to secure THC medication for her only child, Michael, aged 20-months, whose seizures have flared up again.
Fighting back tears during a press conference in Cork yesterday, Ms O’Neill, who is originally from Kilgarvan, Co Kerry, and who has had to give up her teaching job and move to Cork to be closer to hospital, said she wants Health Minister Simon Harris to simplify the licensing system immediately, on humanitarian grounds.
“We already have a heavy cross to bear, with what our children have been born with. To put anything in the way of that, to make it more difficult in any way at all, you would have to be of unsound mind to do what he’s doing to families in this country.
I just feel very uncared-for by our policy-makers. It’s like my son is a nothing to them, and they are your whole world to you,” she said.
Michael was born healthy and passed all his developmental checks, until his first seizure on December 19, 2016, two days after his christening. After a second seizure that day, he was taken by ambulance to Kerry General Hospital, before being transferred two days later to the Bon Secours Hospital in Cork.
His condition deteriorated, and, within three weeks, he was transferred to Cork University Hospital (CUH). He was diagnosed with bilateral frontal polymicrogyria — too many folds on the surface of the frontal lobes of his brain — which causes excessive electrical activity, and developmental delay.
When he was discharged from CUH two months later, he had up to 20 seizures a day. He has been treated with 10 anticonvulsant drugs, without success.
“He went from being a real pounder of a baby for feeding to, in August, getting chest infections and aspiration pneumonia. We had several frantic dashes to A&E and, before I knew it, my lovely baby had a tube in his nose and he’s been fed like that ever since,” Noreen said.
She spent months researching, and when it became clear that the medics were running out of options, Michael was weaned off the medication.
She began to administer CBD oil after his 14th seizure on January 5, a Friday. He had seven seizures on the Saturday and just three on the Sunday. Within 72 hours, he was seizure-free: “The CBD therapy had done what 13 months of treatment, involving 10 anticonvulsants, had failed to do.”
Michael has recovered his swallow and has reached important developmental milestones.
The last four months have given them a taste of what normal life could be like — unlike last week, when the seizures returned: “It’s hard to put it into words what he’s achieved in the last four months without the seizures. And what he could be like now, if the intervention with CBD had taken place a year ago, if his medical team were able to reach for that on the dispensary shelf in the hospital and try it. Those are the most valuable developmental months. So much has passed him by. My fear now, seeing seizure activity again, is that the progress he’s made in the last four months could be taken away again.”
She said medics here can only work with the tools they have, but that there is detachment at political level for the plight of people like Michael, who require THC: “They are just completely devoid of empathy and understanding, in any way, shape or form, of the reality of what it’s like to live with something like this. It is quite literally a living hell. You have that adrenalin pumping all the time; your heart is racing, like you’ve had too much coffee every single day.”
She became accustomed to the trauma of watching Michael suffer up to 20 seizures a day, but has vowed not to let that happen again. Combining CBD with THC — the so-called power-house package — is what Michael needs now, she said. But it can only be accessed through a special licence.
She said the application mentions ‘where standard treatment options have failed’, but noted: “Whoever put that document together, to them it’s just a few words thrown together, but the reality of that sentence for us, was those 10 treatment options that destroyed his body.
She is now preparing for all eventualities, including having to travel overseas to access the treatment.
Noreen is being supported by medicinal campaigner Vera Twomey, who took on the State on behalf of her daughter Ava, and secured a licence for medicinal cannabis to treat Ava’s seizures.
Vera said it’s heartbreaking to see another mother facing the same battle: “The change in Ava has been extraordinary. This is so traumatic, to be dealing with the seizures, to have to come out in public and speak about your situation. But if you don’t come out in public and speak about your situation, they won’t listen.
Haven’t the last couple of weeks, with Vicky Phelan and her journey, shown that if you don’t come out in public and let people know, then nothing will be done? It’s the cruellest, most heartless, most inhumane measures to put people through to grant a licence.
She said medical experts in Holland view TCH as a medicine and she said it must be legislated for here: “Simon Harris needs to do something urgently. This isn’t just for Michael. It’s for dozens and dozens of people. There is an exodus of people leaving the country and it can’t be allowed to continue. These children deserve so much better.”
Socialist Party TD Mick Barry said this issue should be seen in the context of the cervical check revelations: “I think we’ve seen, in the last few days and weeks, the cold cruelty of bosses in the HSE to women and women’s health issues in this country. “There’s cruelty being shown to parents, families, and children here. But more often than not, the people who carry that weight are mothers, are women, and this is another example of a harsh and indifferent attitude to the suffering of those women, those families, and those children and what they’re going through.”
The Health Minister has said it is within his power to grant a licence for access to cannabis for a named patient, once the application is supported by relevant clinicians.