Dorset parents raise awareness of epilepsy complications after daughter's sudden death

  • ITV News Meridian's Harry Acton spoke to Amber Walker's parents about their daughter

The parents of a young woman with epilepsy who died suddenly are speaking out about her death to raise awareness of the condition.

Amber Walker from Bournemouth, Dorset, died from Sudden Unexpected Death in Epilepsy (SUDEP) at the age of 22, after being diagnosed when she was a teenager.

According to Oxfordshire charity SUDEP Action, there is one death per 1,000 people with epilepsy, per year.

Amber's parents, Martin and Amanda Walker, want more people to be aware of the risk of SUDEP and say more open discussions are needed.

Amber with her father Martin. Credit: ITV News Meridian

Martin Walker, Amber's father, said: "I think she managed amazingly. You underestimate how difficult it must have been for her and I think she did struggle but she did incredibly well.

"She worked, she had good humour, she made us laugh a lot, she drove us nuts as well, but she coped with it pretty well.

"I think the one thing we weren't ever prepared for, was the fact that someone could suddenly die."

Amanda Walker, Amber's mother, said: "We never even heard of it, we'd been in the system since she was 12 years old to when she died at 22.

"Not one clinician had ever mentioned SUDEP. She died while we were away in Australia which was really harsh for us.

"I mean it's harsh anyway but it's an other worldly pain to have that happen to you."

Amber Walker was diagnosed with epilepsy when she was a teenager. Credit: Martin & Amanda Walker

It was the first time Amber's parents had left her with her brother and sister, who were educated about how to deal with a seizure.

Sammy Ashby, CEO, SUDEP Action, said: "Because we know that many epilepsy deaths are preventable, there's a lot of steps that we can take to try and help people live as safely as possible with their epilepsy and that's what we really want to try and get across.

"So things like getting as best seizure control as you can, taking your medication regularly and reliably, making sure you're on the best medication for you, they're all things that can really help but also just knowing about the risks."

Martin and Amber Walker believe more awareness of the condition is needed to prevent other families suffering the same loss that they have.

Amber's father Martin said she managed her condition "amazingly". Credit: ITV News Meridian

Amanda said: "You think that it's never going to happen to you and then it's why, why did it happen to us?

"Then you think well actually it's not just us, why not us? But the pain is just indescribable, it's other worldly."

Martin said: "It just leaves a massive hole, it's a shock. Sudden death is a shock, but in a youngster with so much life to live and so much talent, so much to give the world."

Amanda said:"It's tough, it's tough. Especially when we know things might have turned out another way and she still could be here so this is why trying to raise awareness about SUDEP is really important to us."

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