THERE ARE FEW things more devastating in this life than being told there is a question mark over the life expectancy of your child. It is a feeling that can only be imagined by most, but truly comprehended by those of us who have experienced it.

The best way I can describe this feeling is that it is like the colour leaves the world. Everything becomes dark, and an icy fear of what lies ahead takes over. No way out, no way back. Purgatory.

Following the birth of my son Michael on 31 August 2016, I looked forward so much to the milestones he would reach as he grew, and I was so excited to see the person he would become.

Never in my wildest dreams did I imagine that our normality would only last three and a half months, when he would have the first of thousands of seizures and begin the greatest fight of his life.

The year of 2017 brought unrelenting seizures, chest infections, aspiration pneumonias, drooling, gagging, choking, vomiting, loss of swallow and ability to eat, drink, smile, reach, roll, or use limbs, cyanotic episodes, emergency hospital admissions and even a transatlantic flight diversion.

I said to my sister one night in December, as I was sitting on the stairs crying, “he keeps trying to die on me”. I ended that year on my knees. Little did I know that one week later, a tiny bottle of oil I bought in a little shop in West Cork would change our lives and quite literally save his.

Seventy-two hours after his first dose of CBD oil, Michael was seizure free. His progress since has been my honour to see.

Why isn’t CBD oil licenced as a medicine?

The only regretful part of this story since has been our policy-makers not acknowledging the CBD oil that saved Michael’s life, and licensing it for medical use here. It devastates me that there are other people living through now what we were a year ago.

It confounds me that those with the power to equip our consultants with this life-changing tool, are choosing not to. I often wonder: do these people go home at night to their own families, and sleep restfully, knowing that a family elsewhere is facing into another night of hell?

I fully rest the accountability for this at the feet of the Health Products Regulatory Authority (HPRA). Health Minister Simon Harris, of course, is the likely target for campaigners on health issues, but he is in certain cases merely verbalising decisions that have been taken by officials.

A recent open letter which I wrote to the HPRA, questioning the continuing delay of the import of life-saving medicinal cannabis to Ireland, remains unanswered. In any case, I expect that any reply given would simply consist of denial and passing the accountability to others.

While these individuals claim to “put the health of people and animals at the core of everything” they do, sufferers of drug-resistant epilepsy have been left utterly defenceless, with more seizures striking daily, hourly, and in some cases every few minutes.

I have no doubt that it would fail any official in this State body to stand where I stood, beside my baby son’s hospital cot, and listen to the sound and look at the sight of such seizures – worse yet, when he grew teeth, and the blood poured from his mouth as he shredded his tongue.

Until recent years, ignorance to the benefits of medicinal cannabis could reasonably be pleaded by our policy-makers. However, since Ava Barry’s story, Michael’s story, and many others both here and in the UK, the reasons behind its continued prohibition from licensing here must be questioned.

We must all call to accountability those who are responsible for licensing products for medical use in Ireland – that is, the Health Products Regulatory Authority. We must all ask the question why? Why is this medicine being withheld from patients who are out of all other options? It needs to be here. It can be here. There are suppliers willing to send it here.

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‘Transparency’ they claim, so I ask once more of the HPRA, enlighten us as to what motive could possibly be preventing the import of this urgently needed medicine?

Noreen O’Neill’s story features in Tabú on TG4 tonight at 9.30pm.