For #EpilepsyDay 2026, Paula has shared the story of her son Leo’s diagnosis with epilepsy – with an important message to other parents of children newly diagnosed with epilepsy – and how a new resource inspired by Leo has now been produced…
Leo was born in 2017, two weeks early, weighing 7lb 13oz. As a first-time mother, I cannot fully express the awe I felt when I first saw him, his perfect fingers and toes, so impossibly small and yet utterly complete. I remember thinking how could something so tiny be so unbelievably perfect.
As Leo grew, he continued to amaze me. From his bravery on his first day of preschool, to the ease with which he met every new challenge, he moved through the world with a confidence that filled me with pride. From the day he was born, and still now, I often sing to him: “I am the luckiest Mammy in the world…” because that is exactly how he has always made me feel.
In 2024, at seven years old, Leo became a big brother to his sister, Penny. Once again, he adapted effortlessly to a new chapter in his life, learning how to prioritise the needs of a newborn while never losing his own spirit.
Eight months after Penny’s birth, everything changed.
Leo had an accident in which he hit his head and broke his arm. What followed was a series of medical interventions, a reduction of his arm while awake, blood tests, CT scans, MRIs, and surgery under anaesthetic.
I began to notice Leo struggling to reconcile the idea that these procedures were meant to help him, when they caused him so much fear and pain. Still, I trusted that once it was over, we could move forward and leave this chapter behind.
Two weeks later, in the early hours of the morning, Leo had his first tonic-clonic seizure.
I remember hearing a strange sound as I slept and thinking nothing of it. When the noise didn’t stop, I woke to find Leo spasming and seizing in his bed. The episode lasted more than five minutes. Emergency services were called, and Leo was brought to our local hospital.
Later, when he was awake, chatting to a nurse as if nothing had happened, I stepped into the bathroom and sobbed silently into my hands. It was the first time I truly felt that I could not keep him safe.
Leo continued to experience nocturnal seizures. After each one, he remained unconscious for over thirty minutes. He was reviewed by the local paediatric team and commenced on medication, but the sense of fear and uncertainty lingered.
Following the onset of Leo’s epileptic activity, I entered a period of grief. I grieved the life before. I grieved the future I had imagined for him, and quietly, I grieved for myself. Sleep became fragmented and anxious. I immersed myself in online epilepsy forums, searching for answers, reassurance, certainty, not realising at the time that epilepsy is deeply individual and that no two journeys look the same. In hindsight, this only intensified my fear.
It was during this time that I connected with Epilepsy Ireland. One of their wonderful Community Resource Officers provided the emotional and educational support I had been searching for in all the wrong places, grounding me, informing me, and reminding me that we were not alone.
In the months that followed, Leo required further medical investigations, including additional CT scans and MRIs. This time, I could clearly see his anxiety escalating before each procedure, the fear building with every test.
As a Child and Adolescent Psychotherapist, I often write stories to help children make sense of difficult experiences, past events, or upcoming changes. Watching Leo struggle sparked an idea. When he was scheduled for his first sleep-deprived EEG, I decided to write a story specifically for him, one that explained the process in a child-friendly, empowering way.
After researching the procedure and sitting with Leo to understand his worries, Leo and the Brain Signal Quest was born.
To my relief and pride, Leo managed the EEG with remarkable ease. It became clear that the story had helped him feel prepared, safe, and understood. Leo and I spoke about it afterwards, and he came up with the wonderful idea of donating the story to Epilepsy Ireland, so that other children might feel less afraid and less alone, just as he had. In the lead up to the incredibly important day of International Epilepsy Day, I’m delighted to see the story now fully produced and available via Epilepsy Ireland for other parents/children who may sleep-deprived EEGs on their horizon. We will also soon have an additional story produced for children for more general EEGs.
Leo’s journey with epilepsy is still unfolding. It is not the path we expected, but it is one shaped by resilience, compassion, and courage. And every day, he continues to remind me that I truly am the luckiest Mammy in the world. To other parents and children who are on this journey, remember that you are not alone.
Thank you, Paula, for sharing your story for this year’s International Epilepsy Day – and for working with us to produce Leo and the Brain Signal Quest. And of course, thank you to the Epilepsy Warrior Leo for thinking about how this story could help other children with epilepsy and donating the story.
If you would like a copy of the book for your child, you can download the book at the end of this page or contact us via our Contact Form on our website to arrange for a physical copy to be posted to you.
To learn more about epilepsy visit the ‘Epilepsy Information’ page on our website.
Further Information
- If you have been inspired by Paula to share your story for International Epilepsy Day 2026, please contact our Advocacy & Communications Manager, Paddy McGeoghegan by emailing pmcgeoghegan@epilepsy.ie
- To see how you can get involved in International Epilepsy Day 2026 by hosting an engagement stand in your local community, visit the 'Raising awareness for International Epilepsy Day 2026' page on our website.
- To learn more about seizure first aid and the key words of TIME, SAFE, STAY, visit the 'Seizure First Aid' page on our website.
- Should you need any information or support about your or your loved one's epilepsy, please do not hesitate to contact your local Community Resource Officer. You can find their details by visiting the ‘Our Local Service’ page on our website.