Leeds mum speaks out on rare epilepsy on 10th anniversary of daughter's death aged just two-and-a-half

In memory of her daughter Edie, Cheryl Murphy, 40, is running Epilepsy Action’s Bradford 10k next Sunday (June 1) with friends as part of ‘Edie’s flyers’’ to raise awareness of Hemiplegia Epilepsy syndrome (HHE).

Cheryl has run Bradford 10K several times before as well as numerous marathons and other races, all of which are done in Edie’s memory.

Cheryl, from Pudsey, said: “Edie was everything a toddler should be – full of fun, cheekiness, happiness and love.

“She hadn’t been diagnosed with epilepsy when she died, but she had had a seizure that was thought to be a febrile convulsion. When she had her second seizure, we thought this was another febrile convulsion. Sadly, we now know this wasn’t the case.”

Edie was admitted to hospital and spent six days on life support following this severe seizure, and sadly died on October 16 2015.

Cheryl said: “She was treated by the most amazing doctors and nurses during that time, and they found out that she had Hemiconvulsion Hemiplegia Epilepsy syndrome (HHE).”

HHE is an epilepsy syndrome that starts in children under four years of age, that can develop after seizures during a febrile illness.

“Until Edie’s passing, we didn’t know there was a possibility she had epilepsy”, Cheryl said. “We had never heard of HHE before. It’s taken us nearly 10 years to be brave enough to learn more about it. We still want answers.”

Cheryl said she’s taking part in this year’s marathon to raise awareness of HHE, adding: “The race has such a friendly atmosphere and is really well-supported, with lots of people coming together for such an amazing cause.

“I’m running with some of our amazing friends who, since Edie passed, have helped us to do lots of things in her memory and have always been there to support us.

“She may have been small, but she left a huge impact on us all and is loved and missed every day.”

If you’d like to receive more stories like this as well as the latest news from Leeds, click here to subscribe to our free daily newsletter.

Louise McCormick, Bradford 10K race director, said “Stories like Edie’s are such a big part of what makes Epilepsy Action’s Bradford 10K so memorable. So many people are running for someone; friends, family members, someone they’ve lost, or for themselves – it’s a reminder of how epilepsy really affects everyone involved.

“Money raised by the event will go directly to Epilepsy Action, helping to support people with epilepsy across the UK. The funds ensure vital resources are available including our talk & support groups, award-winning helpline, and one-to-one befriending service.”

Epilepsy affects around 51,000 people in Yorkshire and around 80 people are diagnosed in the UK 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. They provide a national network of support groups, with advice available on its freephone helpline 0808 800 5050 or online.

Entries for this year’s Bradford 10k close on Sunday, May 25. To sign up visit the website.