A SOUTHAMPTON drum teacher visited Downing Street to encourage research into the condition that took his sister's life.
Rebecca Hayward had lived with epilepsy since she was 12-years-old but died suddenly in her sleep aged just 28.
And 19 just 19 weeks later her mum, Jeannie Hayward died of heart failure which doctors said at the time could have been caused by the stress of losing her daughter.
Since then, Rebecca's brother Boyd Hayward has been campaigning to raise awareness for Sudden Unexpected Death in Epilepsy (SUDEP) which conducts vital research into the condition.
He was invited to meet with experts, industry bosses and other supporters of charity, SUDEP Action, at a reception hosted by the prime minister's wife Samantha Cameron in Downing Street.
At the event the charity launched a new appeal into a pioneering device which could cut epilepsy deaths.
The miniature wireless apnoea detection device, created by Professor John Duncan of University College London, will alert friends, relatives and carers if a person stops breathing while asleep.
It is hoped that the device could prevent some of the 1,150 deaths in the UK caused by the condition, by warning loved ones early enough.
But before it can be rolled out, the charity needs £165,000 for tests.
Boyd, 34, from Warsash, said: “By visiting Number 10 the charity were able to thank its supporters and celebrate the new campaign.
“The new device could have saved Rebecca's life if it had been available earlier because her flat mate could have been alerted and found her hours before she did.
“It's vital that the charity raises the money it needs for tests quickly so that the device can start saving lives.”
Jane Hanna OBE, chief executive SUDEP Action said: “We are very grateful to Mrs Cameron for generously hosting us and helping us raise awareness of this issue.
“Apnoea is a leading contender as a cause of SUDEP. At the moment there is no reliable method to detect apnoea in the home with the consequences that there are hundreds of preventable deaths every year in the UK.”
As part of its research the charity is also calling for people who have lost loved ones to SUDEP to register their death on their website. The register will help provide researchers with vital information which may help them understand and find ways to prevent the condition.