Epilepsy tragedy pushes mum into 4-year campaign

Chris Jeans, an ambassador for Sudep Action UK, with her late son Stephen. Picture: contributed

Chris Jeans, an ambassador for Sudep Action UK, with her late son Stephen. Picture: contributed

0
Have your say

A MOTHER whose son died in his sleep of a rare and unexplained illness has told of the “pain and devastation” that pushed her to find out why.

Stephen Jeans had battled learning difficulties and epilepsy since he was a child, but was “fit and healthy” when he died unexpectedly, aged 38.

His mother, Chris, who lives in Mid Calder, has turned her anguish into a four-year search for answers, helping to raise awareness of Sudden Unexplained Death from Epilepsy (Sudep).

The condition kills three people in the UK every day, and is in the top-ten causes of sudden unexplained death, but has so far been subject to a lack of medical research.

Now her campaign has taken her to Downing Street, where at a reception hosted by Sudep Action, the UK charity that Chris represents as an ambassador, she was able to share her story with Samantha Cameron.

“It was a shock to the whole family. It wasn’t expected,” said Chris about her son’s death. “He had quite a happy life, although he was on a lot of medication and needed care.”

“My son was fit and healthy when he died. Nobody ever told us that you could die of an epilepsy-related death. Certainly if I had known about this, then I would probably have had a monitor on Stephen’s bed, and staff would have been alerted. There could have been a very different ­outcome.”

Chris described the loneliness of facing Stephen’s death without any outside support. “After the funeral, I was ­trying to come to terms with what had happened, so I resorted to the web, and found the ­charity Sudep Action, because I wanted answers.

“Being with other members of families who had been through the same experience as you, helped tremendously. You can talk at length about your own story, you can listen to theirs, and you each know the pain and devastation you’re going through. This is what I was looking for. I didn’t have that in the days and weeks after Stephen’s death, because nobody ­signposted me to somebody who I could speak to on the other end of a phone and who could listen to me.”

Chris and Sudep Action are pushing for £165,000 to fund monitoring devices that could have saved her son’s life. Campaigners are also promoting a death register to help collect case studies that could aid researchers study the condition and eventually eradicate it.

“It was a tremendous experience to go down there and meet Samantha Cameron, who was so welcoming and a very, very nice lady.”

“After what we’ve been through, if I can prevent in any tiny way other families going through the same thing, that is what I am striving for. And I’m also striving for an answer to the question: why did he die?”

Jane Hanna, chief executive of Sudep Action, said: “Chris Jeans is a wonderful ambassador for Sudep Action.

“She has managed to turn the most devastating event in her life into something ­positive to help others. We are very grateful for her continued ­support for the charity.”

paris.gourtsoyannis@edinburghnews.com