Five years ago, my sister Olly died from Sudden Unexpected Death in Epilepsy, SUDEP. She was married with two children, James and Sienna, and was just 31 years old. We were all really shocked, particularly as none of us knew about SUDEP, yet it is estimated to account for up to 18% of deaths in epilepsy.
In April of this year, I ran the London Marathon to raise money for research into Epilepsy as I think more needs to be done to understand every aspect of Epilepsy.
On July 17th, my Dad, Paul, is raising the bar(!) and plans to take 6 days to cycle 500km from London (Canada) to Toronto, via the shores of Lakes Erie and Ontario! Click here to see the route. Not only that, he and his support team propose to sleep in a tent each night, no pampering for them at the end of each day!
My Dad’s aim is to raise funds for SUDEP Aware, a not-for-profit organisation co-founded by my sister, Tamzin. Its primary goal is twofold, to raise awareness about SUDEP and to gain a better understanding of SUDEP. We need to raise awareness as apparently Doctors in general are reluctant to tell epilepsy patients about the risk of SUDEP. Similarly, Coroners under use the term SUDEP on death certificates, thus hampering the ability to gather scientific data. The organisation’s ultimate goal is to find the cause of SUDEP and help prevent it.
My Dad will be joined and ably assisted on his travels by family and friends. It will be an awesome adventure and I plan to document their emotional trip here!