Anna Carter
The Carter's page
Fundraising for SUDEP Action
Story
Our niece/cousin Rachel died in her sleep nearly 5 years ago from SUDEP (sudden
death in epilepsy), at just 18 years old. The
shock & devastation of losing someone so young to a seemingly non
life-threatening condition is indescribable, and yet 5 years on 600 families a
year are still going through the same heartache. Young adults are at particular
risk and they are often alone at the time of death.
So what causes SUDEP? The
exact causes are not always known. However, apnoea (breathing stopping) is the
most likely reason. In some cases the heart stops first. Either way, if there
were a monitor to give the alarm when someone stopped breathing, then there may
be a chance of saving their life through CPR.
What will this project aim to achieve? As a charity, "SUDEP Action" deals daily with devastated parents and friends who have lost someone to epilepsy. Imagine a world where no parent has to go through the dreadful experience of losing their son or daughter to SUDEP. The goal of this project is to help make that vision a reality.
Professor John Duncan of UCL has developed a tiny device which can detect when people stop breathing. This project will allow the device to be tested on 50 people with epilepsy. If breathing stops, an alarm is triggered. There is currently no such device in production and the ultimate aim is to produce a minute device which could be worn all the time by people at high risk of SUDEP.
To kick-start our efforts in helping to fund this project, we will be doing the Family Fun Run on Sunday 1st March. We would really appreciate any support you can give, and it could help prevent future tragic deaths like Rachel's.
Thank you so much.
Anna, Mark, Josh & Siena