'We didn't know our daughter had a rare form of epilepsy until she died'

A mother whose daughter died from a rare epilepsy syndrome is running Bradford 10k in her memory, 10 years after her death.

Cheryl Murphy, from Pudsey, will be joined by nine of her friends and family to run the race on Sunday, after completing the Manchester Marathon in April.

Two-year-old Edie died in October 2015 after a seizure caused by hemiplegia Hemiconvulsion syndrome.

"It's so, so rare," says Ms Murphy. "When the doctor first spoke to us about it, they said that usually, unfortunately, when they have this seizure, because it can't be controlled, the child will likely pass away.

"So it's one of those things you don't know your child has until they have this seizure. Unfortunately, I don't think there's any testing or any other way to detect it.

"I only know one other family whose child has hemiplegia Hemiconvulsion syndrome, and we found that after Edie died and the family reached out to me from Australia."

Edie's illness became apparent in April 2015 when she began experiencing febrile convulsions.

"Edie had a fever then a febrile convulsion in the April, as she had croup, and she had a really high temperature. In the October, she was a bit poorly again with a bit of a cold."

The family were moving from Edinburgh to Yorkshire that weekend, and were preparing for the long drive when Edie had another seizure.

"My husband went up to check on her and I just knew from the way that he shouted my name that something was wrong.

"I just knew. I don't know why, because it could have been multiple things. But how he sounded was how I had shouted him when she had the seizure the first time."

The only way doctors were able to stop Edie's seizure was by inducing a coma. After five days Ms Murphy and her husband, Tom, were told she had hemiplegia Hemiconvulsion syndrome.

"They were never able to bring her out of the seizure," says Ms Murphy. "They tried to reduce the sedation but her body was just too damaged."

Weeks later, Ms Murphy began fundraising for Edinburgh Children's Hospital charity and 10 years later the family has raised more than £35,000 for charities including Millie Wright Children's Charity and Epilepsy Action.

"When we had her funeral, we were sat with all our friends and they started saying, 'I'll do something' and we kind of grew this list," she says.

"So 2016 became the year of running because we did all the 10ks, but I kept adding things like half marathons and then we did the Yorkshire Marathon.

"It gave us a way to parent her, even though she wasn't here.

"We just needed something to focus on other than the fact she died and I liked it in a way because it gave people something to talk to us about."

Running was also a way for Ms Murphy to help process her grief - and get some time to herself, as she was also raising her two other daughters, Annie and Eilidh.

"We used to go out for a run and put music on and it was half an hour to get away from everything and sometimes I'd be crying because a song would come on and I'd be thinking it's Edie's favourite song.

"But then the next song would come on and I'd remember her dancing around the kitchen or getting the words slightly wrong.

"Now, when anybody thinks about us running, they think of Edie. So it was a positive something for her."

The family is now raising awareness about hemiplegia Hemiconvulsion syndrome, as it was something they knew nothing about before Edie's diagnosis.

"I very naively thought there's a few types of epilepsy. We've spent a lot of time raising awareness of the hospital and they deserve every bit of it because they were amazing, but now I'd quite like to focus more on why she passed away," she says.

Ms Murphy first did Bradford 10k in 2019, and has run every race since.

The event is organised by the charity Epilepsy Action, which is celebrating its 75th anniversary in 2025.

This year will also be special for Ms Murphy because she will be part of a group of 10 – all in specially printed T-shirts.

"These are all friends that I've made from Pudsey and so they've never met Edie," says Ms Murphy. "They've only known her through what we've shared.

"It means a lot to me that they want to get involved, but it's also a massive challenge for some of them because it's their first proper race and this is the whole reason they've started running."

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