Hike for Lyla – how Ed is making a difference this Purple Day

Ed and his family’s life was turned upside down on 5 June 2023, when his then 10-year-old daughter Lyla had her first seizure.

Many more seizures followed in the wait until she was finally diagnosed with epilepsy and was prescribed medication to help control her tonic-clonic and absence seizures.

Since then, Ed and his family have put on fundraisers every Purple Day to support Epilepsy Action and help ensure more research and awareness of the condition.

In 2024, they held a Purple Party, selling cookies, purple ribbons, hosting a mini trampoline jump-a-thon and having a Purple Day Forest School session.

In 2025, Ed and his wife walked a marathon distance of 26.2 miles through the Surrey Hills, which Ed is planning to do again this year at the end of March with his newly formed walking group Mindful Miles.

“Life, as we knew it, changed”

“The 5th of June 2023, was like any other normal Monday morning. It was the first day back to school after half term.

“By 8:32am, Lyla had had her first seizure. Life, as we knew it, was about to change in a way we had never even imagined it could.

“Lyla continued having seizures for the next few months. Like many, Lyla doesn’t get any warning signs before a seizure, so we were just living in a waiting game, never knowing when the next might be or how bad it might be.

“Cut forward, after an awful seven months, the doctors managed to get her medication right and her seizures are now well managed, so we have had a chance to rebuild and try to make sure she is living her life as a ‘normal’ 11-year-old.

“Many are not so lucky. Epilepsy does not discriminate. Before her first seizure, Lyla was the picture of health, she had no previous health conditions, she was not unwell, it does not run in the family. Every day, 80 people are diagnosed with epilepsy in the UK. Many of these are children.

“Lyla has taken her new challenges on in the most positive, resilient way. She doesn’t let it stop her doing things she wants to do; she doesn’t believe that it makes her any different and she isn’t scared to tell people that she has epilepsy.

“She said very early on: ‘I’m kind of glad it was me that got it. I know I’ve got a family to help me. I can’t imagine someone else, that doesn’t have a family having it and having to deal with it by themselves.’

“This is why Lyla decided, rather than let this be a negative thing, she’d turn it into a positive and try and raise some money to support those less fortunate than her.

“One of the main resources we used was the Epilepsy Action website, which is why we fundraise each year on behalf of Epilepsy Action.

“As well as our 26-mile hike last year, we had lots of children getting involved with little fundraising projects throughout the week. There was a forest school session for local children, with all proceeds going straight to the fundraiser and the girls took their fundraising venture to school, who also got involved with supporting this wonderful cause.”

Ed will be doing an extended version of the Surrey three peaks challenge, usually around 23 miles, to take it to 26.2 miles to match the distance of a marathon.

If you want to support Purple Day this year, grab your Purple Day pack now!