Stepping in to support grieving families

There can surely be no greater agony than for loving parents to lose their precious child.

“Our world fell apart,” says Roger Scrivens, recalling the awful day that he and wife, Sandie, lost their youngest daughter, Becky, pictured, in May 2004. Just 11 years old, their beautiful girl was snatched away in the cruellest of ways.

Epilepsy is one of the top ten causes of early death. And Sudden Unexpected Death in Epilepsy – or SUDEP – leaves a trail of pain for families and distress for friends, acquaintances and professionals, as everyone tries to understand what happened and why.

For Roger and Sandie, losing their daughter was a living nightmare.

But something inside keeps you going and something ‘ outside’ helped that process,” says Roger.

“The ‘ outside’ I speak of was SUDEP Action.

“Three days after Becky’s death we heard the words ‘ Sudden Unexpected Death in Epilepsy’ for the first time from the coroner.

“Some web searching uncovered the SUDEP Action website and our first viewing of the acronym SUDEP, and the horror associated with it.”

And he adds: “SUDEP Action helped us through our darkest days and provided a cathartic channel along which we ventured.”

About 1,200 people die from epilepsy each year in the UK. More than 100 of those deaths occur in Scotland, many of them in young people – and over half are potentially avoidable.

The charity steps in to help families through the shock and confusion, whether or not they had previously been aware that their loved one had epilepsy.

Because the loss is so sudden, families are thrust into a range of distressing situations. SUDEP Action’s support team helps them understand the investigations that must take place, answering questions, providing vital guidance and helping families through Fatal Accident Inquiries.

The charity also works with UK and international research teams to help prevent epilepsy deaths – striving to get the answers that will save lives.

And during the coronavirus pandemic, almost 20,000 people took part in the charity’s online epilepsy memorial day.

Roger and Sandie have not forgotten the help that got them through such an awful time.

Roger says: “We are all mortal, and Sandie and I decided some time ago that when we pass on, we want to leave a bequest to support the work of SUDEP Action.

“To us, it will be a tangible way of saying a final thankyou to an organisation that has helped us continue our lives following our saddest of days.

“Beautiful, fun- loving, intelligent, creative, Becky was much loved by all who knew her. Our beautiful Becky is no longer with us, but her memory always will be.”