Did you know nearly every hour a child or young person is diagnosed with epilepsy in the UK?
That’s 23 every day.
No child should face this alone.
Last year, for the first time, 23 young people and families helped us mark Purple Day by sharing honest, personal stories about living with epilepsy. The response was overwhelming - thousands of people engaged, learned something new, or saw childhood epilepsy differently for the first time.
This year, we continued that commitment
In the leadup to Purple Day 2026, 23 children and young people opened up once again about the realities of epilepsy. Each highlighting some of the scariest moments of their epilepsy journey.
Their voices were raw, honest and powerful.
My first seizure was the most shocking because I never knew it was gonna happen to me and I couldn't speak for hours after.
- Fin
"My seizures affect my whole body and my breathing, and I end up needing lots of help and medication. I’ve spent a lot of time in hospital.”
- Manny
“I had my first ever seizure in the middle of a shopping centre… I was sitting thinking ‘oh no, everyone’s watching me’ and I felt really intimidated and anxious.”
- Alisha
“The first time Elijah had a seizure we didn’t know what was happening… it was very confusing and quite scary. Elijah has dramatic long seizures, so it’s scary every time.”
- Fiona, Elijah's mum
Sometimes with my seizures I feel like I can't do anything and I'm weak. That can feel scary.
- Rafferty
To everyone who shared their experiences with us: a HUGE thank you. Your openness has helped more people understand the reality of epilepsy and why awareness matters.
That’s what Purple Day is about
Turning lived experiences into awareness.
Turning awareness into action.
And turning fear into hope.
Today is #PurpleDay, and it’s the final chance to support our Purple Day Appeal.
Donate now to help stop the fear of seizures
Your support will help us:
- Fund vital research into childhood epilepsies
- Provide specialist, day-to-day support for young people and families
- Improve understanding in schools and communities
- Build a world where no child feels afraid of their own body
Two years of stories have shown us one thing clearly: young people want to be heard.
This Purple Day, you can help make sure their voices lead to change.
Together, we can turn fear into hope.
