National charity Epilepsy Action has updated two of its most-loved children’s books, designed to help parents and carers explain their condition. The books ‘My Mum/ Dad has epilepsy’ are aimed at children aged six and over and are a free resource on the charity’s website.
The books have been recently updated in a close collaboration with families affected by epilepsy as well as medical experts including a clinical psychologist, an epilepsy specialist nurse and a paediatrician. Epilepsy Action’s Health Information team created a new storyline, and the book features new illustrations from Bethany Evelyn.
Alison Tebbutt, health information and research officer at Epilepsy Action, was involved in the creation of the books. Talking about the story itself, she said: “Charlie’s parent has been diagnosed with epilepsy. After some honest chats, Charlie now understands that it’s not something to be afraid of, it’s just something to be aware of.
Speaking to parents directly, Alison said: “When you’re ready, Charlie can help you explain what epilepsy is, how it affects you and what children can do if you have a seizure.
“We have lots of information for parents and carers about looking after a baby or young child when you have epilepsy.”
Epilepsy Action has a large network of Talk & Support groups across the country, with some designated for parents. The charity highlights the concerns that can come with living with epilepsy and having a young child, and their mission is to ensure all these parents feel supported and empowered.
Alison Fuller, Director of Health & Influencing at Epilepsy Action, said: “We know that parents with epilepsy often have a lot of concerns, with some worrying about their child’s safety, the unpredictability of seizures or their children having to take on more than others at their age. These are all very understandable, but it is our job – as a charity promising to support people with epilepsy across the country – to combat these anxieties.
“We’re very proud of our wide range of children’s resources and are delighted that we have been able to update our children’s books. This is an invaluable, free resource that is enabling parents living with epilepsy to have open and authentic conversations with their children about the condition – it is a privilege to be a part of that.
“In 2026, the charity will continue to expand its children and parents’ resources and ensure that families across the country are able to live in their ‘World Without Limits’.
“My Mum/ My Dad has epilepsy” are available to freely download or order via the Epilepsy Action website: Looking after a baby or young child – Epilepsy Action.
Epilepsy affects around one in every 100 people in the UK and around 80 are diagnosed every day. Epilepsy Action is committed to improving the lives of people with epilepsy, by campaigning for better services and raising awareness of the condition. The charity provides a national network of support groups, with expert advice available on its freephone helpline 0808 800 5050 and online at www.epilepsy.org.uk.
