For SUDEP Action Day 2025, Margaret Bassett has shared this piece about the loss of her daughter Lisa, 20 years on from her passing…
In a few days’ time, all going well, I will be 65 years young! If my lovely daughter Lisa was alive, she would have been 45 years old - but the universe or something I still can’t fathom had other plans.
On the 1st June 2005, at the age of just 24, Lisa died from SUDEP when she was a young healthy & energetic woman.
She had two younger brothers who looked up to her. Lisa had just completed her Degree in English Literature in NUI Maynooth & was looking forward to starting her Masters in the autumn. Lisa had also studied science in Trinity College Dublin for 3 years. But Lisa’s proudest achievement of all was the birth of her gorgeous baby boy Tiernan who was 13 months old when she died.
Lisa was born in Holle’s Street Hospital Dublin on the 9th July 1980 to two young inexperienced parents who absolutely adored her. She was surrounded by so much love especially by my sister Carmel, brothers Ray & Gay & my late kind mother - they doted on her.
Lisa developed epilepsy at around 4 years of age. It is difficult to say exactly at what age the diagnosis of Temporal Lobe epilepsy was made as the medical diagnosis & management proved to be a bit of a mine field. It was a very stressful time for us as a family, but Lisa came through it all with great courage & determination & we were so fortunate to have Lisa in our lives for another 20 years. Lisa was put on anti-seizure medication and only had nocturnal seizures with the very rare breakthrough seizure during the day. The impact of epilepsy on Lisa’s life seemed only minimal & this pattern was to continue for most of Lisa’s life.
Shortly after Lisa’s diagnosis I felt I needed to educate myself about epilepsy & I contacted Epilepsy Ireland (then known as Brainwave). Their support, information & advice proved invaluable to me as parent. Even thought we had very loving and supportive family & friends, I felt strongly (and still do) that receiving accurate information on the condition is vital as everyone’s epilepsy is unique. Little did I know then that years later, I would have the honour of working with Epilepsy Ireland as a Community Resource Officer for the Midlands.
This meant I received the most up to date information on the many aspects of epilepsy - including SUDEP. Because I had direct access to this information as part of my role, I was able to share the information with Lisa, and we did have chats about SUDEP and the potential risks. Lisa concluded, after a lot of thought & consideration that life was for living. She resolved to do her best to live a healthy and safe life.
Lisa flew through life at the rate of knots; totally undeterred or held back in any way by her epilepsy. It never defined her & it certainly never stopped her achieving all her many goals and dreams. She loved writing and even won an essay competition –her prize being a trip to Finland! On the trip she did canoeing and rock climbing; took relaxing saunas & even skinny dipped in ice water!
Lisa had a large circle of friends. She loved the craic and socialised with her pals. She loved travelling and Rome was on her to do list. Lisa adored her Da and I’d overhear conversations between them on all manner of topics – including the existence (or non-existence) of a parallel universe!
Academia came easily enough to Lisa, but I feel she came into her own when she became a mother -she was fantastic! Lisa delivered her baby in Holles St Hospital Dublin armed with a birth plan because of her epilepsy. She was brilliant & thankfully all went well for her labour. Lisa & her baby came home to live with us in Tullamore - the joy & excitement in our home was immense.
Lisa was so loving and caring to her baby boy. She simply adored him, and nothing was too much trouble. She batch cooked all his solid food for freezing and would laugh when I’d suggest that maybe some of the food was a bit too spicy as I thought he was a bit young for Mexican cuisine!
As I mentioned Lisa was up to date on the different issues relating to epilepsy and not long before she died, she discussed SUDEP with me again.
She started to express her concerns for her baby in the event of her passing due to SUDEP. It was the furthest thought from our minds at the time. To ease Lisa's worries, I suggested she write down what she would like to happen for her baby in the event of such a thing happening. She wrote what was on her mind on a notebook page in a few sentences. She asked her Da & I to sign the page as witnesses. Lisa gave the page to her Da for safe keeping & we promptly moved on.
On the 1st of June 2005 - a beautiful sunny morning - we discovered Lisa in her bed. She had died from SUDEP during the night. She had gone quietly in her sleep as we never heard a sound during the night. Lisa's adoring baby boy lay beside her snug safely in his cot blissfully unaware his lovely Mother was no more. Our world fell apart - our greatest joy was gone.
But Lisa's baby boy needed us & because Lisa had discussed SUDEP not long before she passed, through our pain & grief, we managed to focus on his needs. Lisa's baby was her gift to us, and he was our beacon through the dark & lonely times.
Tiernan is now a young man of 21 studying in Trinity; just as his mother did. Earlier this year, to mark 20 years since his mother’s passing, he ran the Cork Half Marathon in memory of his mother, in support of Epilepsy Ireland. If it’s possible to burst with pride for a young man, well, I’ve already exploded! I don’t know if he will ever realise his part in keeping us ALL alive during the many times when grief would engulf us and when we could feel so lost & isolated. He was our light in the darkest of times.
Lisa has left us a massive legacy of courage, strength & determination. I could write about Lisa all day, but with it being twenty years since her passing, I wanted to share our experience for this year’s SUDEP Action Day. Far too many people with epilepsy and their families don’t know about SUDEP and epilepsy-risk. My message is to not be afraid, just like Lisa wasn’t.
Ask the questions and become informed about YOUR epilepsy. Like every condition, epilepsy carries its risks. Speak to your specialist team, take your medication as prescribed and do everything you possibly can to become seizure free. Have the conversation about SUDEP, learn the risks and what can be potentially done to reduce them but as Lisa did, never allow epilepsy to define you - get busy LIVING!
Lisa is never far from my thoughts. I try to honour her every day, and I hope by writing this piece, I have honoured her today and helped encourage just one person who may be reading to learn more in her memory.
Thank you for reading.
To Lisa,
I’m glad I overheard all your chats with your Da – and I do hope there is a parallel universe because I know you’ll be flying through life there at a rate of knots. I'm so proud to be your Ma. I'm so glad of our many many chats in your lifetime and beyond.
Thank you so much Darlin.
Lots of love,
Ma
xxxx
We would like to thank Margaret for taking the time to share her story and the devastating loss of Lisa as part of our public awareness activities for SUDEP Action Day 2025. We would also like to thank Tiernan for his incredible support for Epilepsy Ireland earlier this year, raising over €3,500 for our work in his mother’s memory.
To follow Margaret’s advice and to learn more about SUDEP, visit the ‘SUDEP’ section of our website.
Lisa Bassett - Ar dheis Dé go raibh a hanam.