Daughter's death sparks campaign (From The Oxford Times)

Daughter's death sparks campaign

11:00am Thursday 19th April 2012 in News By Thom Airs

SHE was a music-loving 24-year-old whose mild epilepsy was kept well in check as she travelled the world.

But a year ago today Jane Swarbrick collapsed suddenly and died.

It was another six months until the results of a post-mortem examination revealed the cause of death as SUDEP – sudden unexpected death in epilepsy.

This afternoon friends and family will gather in Oxford’s Cutteslowe Park to launch a fundraising drive to help learn more about the illness and spread awareness of SUDEP.

Jane, who grew up close to the park and attended Cutteslowe Primary School and The Cherwell School, was diagnosed with epilepsy at the age of six but was clear of symptoms between 12 and 15.

A keen music fan, she worked at Virgin and Zavvi in Oxford and was proud to have served Supergrass while working at the Trout pub at Wolvercote.

Her father Andy spoke about his daughter for the first time yesterday, saying the condition was “always mild” and produced no more than 100 fits during Jane’s life.

Last April he and wife Les visited their daughter in Dublin, where she had settled having travelled the world after Zavvi went bust.

After a relaxing weekend of walks in the Irish countryside they waved goodbye to “a girl who was very wide awake and had everything to live for”.

Next day the Swarbricks, who now live in Freeland near Witney, got a call to say their daughter had died.

Mr Swarbrick said: “I came across the word SUDEP on the Internet the week before we got the autopsy report. I had to tell my family Jane’s death was a result of epilepsy rather than an accidental consequence of it.

“The ‘u’ in SUDEP can mean several things. When the word was coined it meant unwitnessed but almost always now means unexpected, but there’s a growing clamour for it to become unnecessary.”

In June, 23 of Jane’s family and friends will tackle the Blenheim Triathlon as part of a mission to raise £20,000 for the Epilepsy Society and Wantage-based Epilepsy Bereaved.

Mr Swarbrick said more needed to be done to monitor epilepsy patients for the signs of an increased susceptibility to SUDEP and increase the depth of research into epilepsy as a whole.

He also plans to create a register of SUDEP deaths to better understand the condition.

He said: “It slips under the radar because epilepsy as an illness is not well researched.”

Visit forjane.co.uk or to donate visit uk.virginmoney giving.com/team/ForJane