Every year, roughly one in every thousand people with epilepsy will die suddenly with no obvious cause. This is what we call Sudden Unexpected Death in Epilepsy or SUDEP.
Damian Swan was 10 years old when he passed away from SUDEP. His death was a shock to the Swan family because they had not known, and never been told, about SUDEP. The Swan family are now trying to raise awareness about the dangers of SUDEP and the steps people can take to try and minimise their risk factors.