We are delighted to have published a new resource for children with epilepsy who may be preparing for a sleep-deprived EEG. The new resource has been written by a parent of a child living with epilepsy and one of our media volunteers, Paula McCulloch.
Paula’s son Leo was diagnosed with epilepsy in 2024. With Leo experiencing nocturnal seizures requiring him to have a sleep-deprived EEG - leaning on her experience as a Child and Adolescent Psychotherapist - Paula decided to write a story for him to explain the process in a child-friendly, empowering way.
After the completion of the EEG, Leo came up with the idea of donating the story to Epilepsy Ireland, to help other children who may be preparing for sleep-deprived EEGs. We were delighted to work with Paula and Leo to produce this story and we are delighted to say that Leo and the Brain Signal Quest has now been published in the lead up to International Epilepsy Day 2026.
The book follows Leo on his journey across space with his trusty pal Rua, while getting an important test done that many children with epilepsy can experience.
We would like to thank Leo and Paula for their efforts in producing this resource which we hope will help many children with epilepsy who are scheduled for sleep-deprived EEGs. A huge thank you also to Philip Elliott for masterfully illustrating the story and for bringing the book version of Leo to life!
As part of the launch of this new resource, Paula has shared her experiences of life with epilepsy via Leo as part of our awareness raising activities for International Epilepsy Day. A small excerpt of this story is included below, but you can read in full by visiting the ‘Awareness’s section of our website.
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.”
We are also working with Paula and Leo on an additional resource for children preparing for general EEGs, which will be published over the coming months.
In the meantime, you can download this new book at the end of this article or should you wish to request a physical copy, please submit your request via the ‘Contact Us’ form on our website.
Thank you once again to Paula and Leo for producing this story which we hope will be of benefit to many children with epilepsy.
Remember – whether you are living with epilepsy or supporting a loved one with the condition, our services are here for you. If you need any information or support about epilepsy or want to learn more about the services we offer, get in touch with your local Community Resource Officer. You can find their details on the ‘Our Local Services’ section page of our website.
Together, we can achieve a society where no person’s life is limited by epilepsy.