This had such an impact on me. Just like Kirsty's family I did not know or were told that the epilepsy my beautiful 29-year-old son was diagnosed with in September could be deadly. On the contrary he was told not to worry and as Kirsty that it was mild. On 27 October he died in the morning getting ready to go to work. He was on his stomach and was found by his employer who had gone to his flat when he didn't come in to work. It was the most devastating moment of my life to receive that phone call telling me I had lost my lovely son and friend. His employer told me he had died of a seizure since he recognized the signs from Jonathan once having had a seizure at work. I had never heard of SUDEP either before and the coroner is still to admit that was what he died of, but I wish I had! We would have been much more involved and made sure some kind of alarm system was in place to alert his flat mates if a seizure occurred. We never got that chance. It is time the medical profession wakes up and make sure that ALL people who get epilepsy are aware of the dangers and what to put in place to safeguard themselves. I have since learned that over 700 young people, mainly young men, die every year and 250 in Australia from SUDEP. When you read the stories of these young people it echoes what I and Kirsty's family have experienced. God bless you all and make sure you take epilepsy seriously!
This had such an impact on me. Just like Kirsty's family I did not know or were told that the epilepsy my beautiful 29-year-old son was diagnosed with in September could be deadly. On the contrary he was told not to worry and as Kirsty that it was mild. On 27 October he died in the morning getting ready to go to work. He was on his stomach and was found by his employer who had gone to his flat when he didn't come in to work. It was the most devastating moment of my life to receive that phone call telling me I had lost my lovely son and friend. His employer told me he had died of a seizure since he recognized the signs from Jonathan once having had a seizure at work. I had never heard of SUDEP either before and the coroner is still to admit that was what he died of, but I wish I had! We would have been much more involved and made sure some kind of alarm system was in place to alert his flat mates if a seizure occurred. We never got that chance. It is time the medical profession wakes up and make sure that ALL people who get epilepsy are aware of the dangers and what to put in place to safeguard themselves. I have since learned that over 700 young people, mainly young men, die every year and 250 in Australia from SUDEP. When you read the stories of these young people it echoes what I and Kirsty's family have experienced. God bless you all and make sure you take epilepsy seriously!