For SUDEP Action Day 2025, Lucy Owens has shared this piece about the loss of her son Luke earlier this year...
Luke was born in 1999; our first child & we were smitten. All was well until Luke began to regress in his skills & speech at age 1 & a half. He was diagnosed with autism & it was a devastating blow for his family. We didn’t know where to go from there & we grieved the life he should have had but with time, we embraced the life he did have.
Luke would go on to be bigger brother to Grace, Rachel & Joey. Luke was the happiest young man. He was so placid - always smiling – and we called him our “Gentle Giant”. He touched so many lives.
In 2016 at age 16, Luke began to have seizures. He was diagnosed with epilepsy shortly after & began taking ant-seizure medications. Because Luke was non-verbal, he couldn’t tell us that a seizure was coming on, and we always felt on constant alert.
We had to be extra vigilant & stay with him while he was in the bath & never leave him alone even when at home. His seizures were so severe that he would sleep for a full day after he had one.
In 2020, Luke became seizure free for almost five years. In 2024, he had made the exciting part-time move to a residential home beside the sea – he loved it and was settling in so well.
As Luke was seizure free, we presumed that he was not in any danger. Earlier this year, on the January 4th, 2025, Luke passed away to what we now know was Sudden Unexpected Death in Epilepsy.
Luke had a normal day & was preparing for bed, watching his iPad when he suffered a catastrophic seizure which then later stopped his heart. It was instant.
Words cannot describe the loss of Luke. The impact of his death upon our family is so immense & will continue to affect us. We are not the same people we were. Grief has become who we are & has settled into our bones – but we have become closer as a family as we know firsthand this devastating loss of a son & a brother.
We had never heard of SUDEP. We did not know the risks. I now know that Luke was the typical category & demographic for SUDEP. We wished we knew about SUDEP, and the number of deaths annually caused by epilepsy. We will never know whether this would’ve changed our approach with Luke and his epilepsy – but as a mother who has lost a child to this devastating aspect of the condition, I feel like being aware of the risks is important.
As a family, we want to keep Luke’s memory alive by sharing our story – and hopefully it will encourage others living with epilepsy and the families that support them to familiarise themselves with the risks and what can be done to reduce them. We are also fully behind Epilepsy Ireland’s campaign to introduce a National Strategy to reduce SUDEP and other epilepsy-related deaths in Ireland.
As Luke’s mother, my thoughts often think back to my pregnancy with him, his birth and his younger years. I can no longer touch his face or hair again – I cannot play with him and tell him how much I love him. There is a constant pain in my chest that does not go away and an ache for him that does not get fulfilled.
I do not want any other mother or family to experience this and if sharing our story can help one person out there with learning more about SUDEP, seeing what can be done to mitigate risks, and having a conversation about SUDEP with their clinicians, it will be more than worth it.
Thank you for reading and for keeping the memory of our Gentle Giant Luke alive.
We would like to thank Lucy for taking the time to share her story and the devastating loss of Luke as part of our public awareness activities for SUDEP Action Day 2025.
To follow Lucy’s advice and to learn more about SUDEP, visit the ‘SUDEP’ section of our website.
Luke Owens - Ar dheis Dé go raibh a anam.