SUDEP Action

Making every epilepsy death count
Call us now on 01235 772850

Loving brother bangs drum about SUDEP

A drummer is reuniting his band The Warm to raise awareness of Sudden Unexpected Death in Epilepsy (SUDEP) following the death of his younger sister.

Rebecca Hayward was just 28 when her friend found her unconscious in bed at the flat they shared in Ocean Village, Southampton, on June 23, 2012.  The keen music-lover, who had lived with epilepsy since the age of 12, had died suddenly, leaving her family devastated.

Her brother Boyd Hayward, 33, says none of them knew about SUDEP – the term used when someone with epilepsy dies suddenly, often after a seizure that involves a loss of consciousness - or that epilepsy could kill her.  Now, Boyd, a professional drum teacher, who credits his sister with inspiring him to take a musical path, is planning to reform The Warm – which has supported successful UK acts such as Snow Patrol and Scouting for Girls.  

The group will play some of their best known songs at The Ranch recording studio in Nursling, Southampton, on November 18.  The tracks will be downloaded on to a CD and sold as part of the ticket price to raise money for Epilepsy Bereaved – the only UK charity dedicated to funding and conducting vital research into SUDEP.

Boyd says he hopes the gig will be a fitting tribute to his sister, who was a regular fixture at The Warm events until they broke up in 2010. He also hopes it will get people talking about SUDEP.  “Every year 1,000 people die from epilepsy in the UK – more than cot death and HIV combined – and more than half of these are from SUDEP, yet incredibly even those closely affected haven’t even heard of it,” he said.

“It wasn’t until the worst happened that I looked further and found even the medical community seemed ill-informed about it. As SUDEP largely affects young people, I thought music would be a great way of getting the word out there. While it will never bring Rebecca back, hopefully by raising awareness we will help people realise the risks associated with epilepsy.”

Boyd was at the Isle of Wight Festival when his sister’s flatmate told him to head home because she had suffered a bad seizure.  “Having never really considered epilepsy to be particularly life-threatening, I thought I’d be greeted by her at the hospital looking sorry for herself,” said Boyd, from Warsash, Southampton. “Sadly, that was not the case and her death still hasn’t sunk in.

“Rebecca always tended to get her seizures in the mornings when she was waking up. I always worried if she was walking around and had a seizure she might bang her head, but I never thought it would kill her.”  Boyd and his sister were “incredibly close” and while he says he is coping with her death, he agrees it’s the little, unexpected happenings or thoughts that hit him the hardest.

“I do feel like I have lost my best friend,” he said. “Sometimes I think: ‘I must text her about that,’ but realise I can’t. I know I will never have an Auntie Bec for my kids if I ever have any, and I won’t be Uncle Boyd to hers.

“She wanted to be a teacher and had recently taken GCSEs in English, maths and science. Her results came in this August and she’d managed to get a B in science and two Cs. She would’ve been so pleased.  “She was such a bubbly girl, who loved music, singing and was always first on the dance floor. 

“She was a drummer before I was – I can still picture her playing on pots and pans to Dad’s Queen videos before he bought her a drum kit. It was only as her interest waned that I set about making a racket of my own, which set me on the path to becoming the person I am today.

“Had it not been for her initial passion for rhythm, I may well have missed out on all the great experiences and opportunities’ drumming has afforded me. And more importantly, the great friendships born out of them.”

For more information on The Warm gig, please contact Boyd Hayward on 07909 546779 or drummerboyd79@gmail.com