A WANTAGE-based charity has launched a £1m life-saving appeal to help prevent sudden death in young people with epilepsy.
Charity Sudden Unexpected Death in Epilepsy, SUDEP Action, launched the four-year project earlier this month with support from Wantage MP Ed Vaizey, who is also the charity’s present.
Called Prevent21, the campaign aims to raise £1m, as well as awareness of the condition, educate people and will highlight how “lives are being unnecessarily cut short by epilepsy each year”.
SUDEP Action was set up by Jane Hanna in 1996 after the death of her then partner Alan.
She said: “While this fight is not new, we do now know that many of these sudden deaths can actually be avoided, if people were being told about their risks.
“We are working tirelessly to help people with epilepsy, their families and clinicians, to do what they can to reduce risks now.
“By joining our fight through the Prevent21 appeal, we can move ahead to stop these sudden and tragic young deaths.”
The charity says every week in the UK 21 people die from epilepsy, while in the past 21 years, more than 21,000 people with epilepsy have died suddenly.
Barrie and Jan Burns, who lost their 10-year-old son Charlie after he had two seizures within days of each other in 2011, set themselves a target to raise £21,000 for the appeal in their son’s memory.
The couple said: “What happened to Charlie should not happen to anyone, and the hole he has left in our lives will never be filled. But we have vowed as a family to turn his death into something positive.
“By working with SUDEP Action since his death, and by supporting their Prevent21 appeal, we truly hope many lives are going to be saved.”
Mr Vaizey said: “This appeal is such an important one both nationally and here in the local community. The fact that so many young lives are being cut short, when SUDEP Action have tools and information to help people with epilepsy reduce their risks, is an utter tragedy.”
For more information go to www.sudep.org/prevent21