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Last Updated: Friday, 17 December 2004, 01:11 GMT
'Epilepsy killed my daughter and grandson'
Image of Kristen
Kristen died unexpectedly in her sleep
Researchers believe heart devices could prevent some unexpected epilepsy deaths. One man describes how he lost his daughter and grandson to epilepsy.

It is more than four years since Arthur Dandy lost his grandson and daughter on the same day.

His daughter, Kristen, was 25 and eight months pregnant when she died unexpectedly in her sleep.

As many as 1,000 people in the UK die from Kristen's condition, called Sudden Unexpected Death in Epilepsy (SUDEP).

Kristen had been sleeping in after covering a late shift the day before at the supermarket where she worked.

More seizures

She was three days away from going on maternity leave.

When her partner, Neil, returned from work later that evening he found her dead in bed.

Arthur explained: "She had been epileptic from the age of 13.

What made it worse was that we knew nothing about SUDEP.
Arthur Dandy

"She handled it well with drugs, so it was pretty much controlled and she was having around three seizures a year.

"This changed when she became pregnant. Her seizures became more frequent, but she was told that this was nothing to be alarmed about.

"When we heard she was dead it was a huge shock. She was carrying our only grandson.

"We do not know what caused her death. We don't know whether it was a seizure or her heart gave way.

"What made it worse was that we knew nothing about SUDEP.

"That was the most difficult part of all.

"We eventually got information from epilepsy charities.


"It was three or four weeks before we found people we could talk to about it.

"Since then we have been working to raise awareness about SUDEP.

"When someone dies from SUDEP, or when someone finds out they have epilepsy, it is a terrifying thing.

"I had no interest whatsoever when Kristen died of speaking to a charity or getting involved in one or speaking to anyone.

"I thought I could handle it on my own.

"But it was hugely helpful to talk to people who had been through similar experiences."

Arthur and his wife now work for a voluntary organisation, The Gwent Epilepsy Group, which was set up to provide support and advice for people with epilepsy and their families and friends.

Arthur is also a trustee of Epilepsy Bereaved, a charity that works towards the prevention of deaths form epilepsy through raising awareness and promoting research.

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