Book cover showing children and a goat playing football, as their families cheer

Building stories together

We’re testing out our new children’s book and we’d love your help. This is your chance to shape something truly special for children with epilepsy

Order your FREE copy today!

Help us get it right

This storybook was made with children living with epilepsy, for children living with epilepsy.

From the very first idea to the final story, children with epilepsy have been at the heart of this book. Your feedback will help us make sure every page speaks to their world, their needs, and their experiences. Let’s build it together.

We listened. We played. We asked questions. And the message came through loud and clear - children want stories that speak to them - not just about them.

So far, we’ve worked hand-in-hand with:

Over 20 families through interviews and play sessions
12 children in co-creation workshops
More than 40 families who responded to surveys
10 epilepsy, education and child development experts
Creative specialists, including a BAFTA-nominated storyteller and an award-winning illustrator

We need your voice

Now, we’re sharing the book with our communities—and we need you.

Your feedback will help us make sure every page reflects the real experiences, emotions and needs of children with epilepsy.

After you’ve ordered the book, we’ll send you a short survey. It’s quick, easy—and it could help shape something truly special.

Because no child should feel alone with epilepsy. And with your help, we can make sure they don’t.

I think it’s so important to encourage normal everyday activities & show they can do
most of what other children can.

We listened to children and families to build something that truly speaks to little ones living with epilepsy.

It was nice to read a story that will talk about epilepsy and open-up conversations with others

Izzy and Joe’s Camping Adventure

A storybook made for children with epilepsy shaped by their voices and their experiences.

Get your hands on our new storybook created for children aged 4–8 living with epilepsy in the UK.

Order your FREE copy today!

Working in partnership

We have teamed-up with our friends at Epilepsy Action to create a book for 4-to 8-year-olds living with epilepsy, helping them understand their condition and feel less alone. This is more than a story - it’s about giving children confidence, comfort, and connection from the very start.

No child should feel alone with epilepsy, and with your help we can make sure they don’t

Why this book matters

There are over 11,000 children aged 4-8 living with epilepsy in the UK. For many, epilepsy can feel scary, isolating and hard to explain. Too often, children don’t see themselves in the stories around them.

They’re left wondering, will I be okay? Will my friends understand? What does my future look like?

And while there’s information out there, it’s not always clear, age-appropriate or emotionally supportive. We believe good information should help children feel confident, in control and seen.

What makes this book different?

This isn’t a one-size-fits-all guide. It’s a story shaped by children, designed to reflect:

Different seizure types—not just tonic-clonic
Different ways of learning, communicating and expressing emotions
The full emotional journey of epilepsy—from fear and frustration to hope and pride
Tools that help children feel like whole people, not just a diagnosis

Watch this space

We’re just getting started. Stay tuned on the Young Epilepsy and Epilepsy Action websites and social channels for updates, sneak peeks and more chances to get involved.

Together, we’re building something powerful. Together, we’re telling their story.

Your questions about epilepsy

What is epilepsy?

Epilepsy is a medical condition that affects your brain. It is caused by a problem in the brain that can sometimes stop the body from working the way it should. The problem can make different things happen to your body called a seizure.

Your brain is the boss of your body. Everything you do, think and feel needs your brain to make it happen. Some of the things you need your brain for are:

Seeing
Moving
Touch
Feelings

What is a seizure?

Your brain works by sending messages around your body using a type of electricity. In epilepsy, this electricity can suddenly go wrong, causing the brain to become muddled. This is called a seizure.

When somebody is having a seizure, they might act differently or feel strange in some way. They cannot stop what is happening to them, but their brain usually only takes a short time to sort out the muddle and work properly again.

There are many different types of seizures

In the book, Lizzy talks about having an absence seizure and a tonic-clonic seizure.

Tonic-clonic seizures

What happens?

The person’s body will suddenly stiffen.
They will become unconscious and fall over if standing.
Their body will begin to shake.
After a few minutes, the person should stop shaking and ‘wake up’.

Somebody having a tonic-clonic seizure does not feel any pain, even if it looks like they do. Their brain is in too much of a muddle to feel anything at this time.

It usually lasts 2-4 minutes.

Absence seizures

What happens?

The person will suddenly stop what they are doing.
They will stare into space and look like they are daydreaming.
The person will come around and may not even know that anything has happened to them.

This usually lasts 5-10 seconds.

Why do I have epilepsy?

We don’t always know why some people have epilepsy. But it isn’t because of anything that you have or haven’t done.

For some people, it could be because:

They’ve banged their head badly or
They had a bad infection when they were a baby or
Other people in their family have epilepsy

For some people, doctors may not know why they have epilepsy.

Can I stay safe?

Children with epilepsy sometimes get left out of activities because people worry they could get hurt if they have a seizure. The good news is that most children with epilepsy can carry on doing the activities they enjoy as long as they are careful and do some simple things to help keep safe – just like Izzy did on her camping trip in the storybook!

You may worry about some things, especially when you first find out you have epilepsy. Having people around you who you can talk to will really help!

Find out how we can support you.