For SUDEP Action Day 2023, Jenny Kelly has shared this powerful testimony with about the loss of her husband Noel....
The night I met Noel I knew by the head of him he was a Kelly from the Hill! He was the 2nd youngest of his family – a family of 14 – and our families were long intertwined before I met him.
We met when I was 18 and he was 20. Six months later, we were engaged and by the time I turned 21, I was married.
Noel was plumber by trade and we two wonderful children – our daughter Mikayla and our son Matt. Matt was just two months old when Noel had his first seizure. It was totally out of the blue when I found Noel seizing in bed one night. He was 27 years of age when he was diagnosed with epilepsy.
Noel struggled to accept his diagnosis – but over time, and with a little pressure from me, he settled into his medication routine and learned more about his triggers.
Our second son Dara arrived, and our family was complete. We had so much happiness and laughter in our house, despite the fear of seizures that comes with living with epilepsy.
I was always aware of the risks that seizures could pose to Noel’s life – as in, if he had a seizure while driving, he could crash; if he was in the bath and had a seizure, he could drown. He was also a goalkeeper, so he could potentially have a seizure during a match.
We took measures to eliminate these risks – I would drive; would sit and talk with him as he bathed; and when he was playing a match, I would follow him to either end of the pitch behind the goals so if he needed me, I’d be there quick.
Noel returned to college in September 2009 to study mechanical engineering – which he loved.
On the 27th of March 2009, he told me that he didn’t feel well. I told him that after he dropped the kids off to school, to go back to bed and I’d come home from work at lunch.
When I got home, there was no sign of him. I remember going looking for him and opening our bedroom door and asking, “are you getting up or what?”
When I approached him, reached out and turned him over, I knew immediately he was dead.
The first time I heard about SUDEP was after the autopsy – too little, too late. I don’t understand why we weren’t told. When I had my children, I knew about SIDS, and I did everything I could to prevent it and followed the guidelines. I never knew about SUDEP, and I never knew Noel could just die in his sleep, in his bed – and I told him to go back to bed! That’s haunted me since.
Why wasn’t I told? Why wasn’t he given a chance to potentially prevent it?
He died at 35, I was 33, our kids were 5, 8 and 10. Our world had ended. There are risks with every medical condition - be diabetes, asthma and so on. Everyone seems to now know the risks, even with no-one in the family with those conditions, but no-one knows about SUDEP.
Inform yourself, question your medical team and have no regrets.
Mikayla is now 25 and a secondary school teacher. Matt is 22 and working in marketing. Dara is 19 and a carpenter apprentice. As for me, I’ve been so lucky to have met 2 great men in my life and have added Aiden to our family.
But…
I will never forget finding Noel.
I will never forget my screams.
I will never forget wailing as I counted to 30 performing CPR.
I will never forget the destruction on his family’s face.
I will never forget my parents’ anguish.
I will never forget telling my 3 children.I will never forget Noel.
We would like to say a huge thank you to Jenny for sharing her and Noel's story. You can learn more about SUDEP by visiting the 'SUDEP' section of our website.
Noel Kelly - Ar dheis Dé go raibh a anam.