Jack was an only child. He died on 23 December 2010, aged 20. He was full of life, well-liked by his peers and he had a great sense of humour. With his whole life ahead of him, he was far too young to die.
After Jack had been diagnosed with epilepsy at age 11, he took his medication regularly and didn’t let it affect his life. We didn’t know about SUDEP and were told that epilepsy was not life threatening, so there was no need to worry.
We were looking forward to Christmas and the night he died I had been out with my work colleagues for a meal. I arrived home to find Jack dead in his bed. My world as I knew it ended that night, it was changed for ever.
The following days, weeks, months were a blur and there were times when it was hard to go on. Jack’s dad and my family were supportive and, of course, they were worried about me, but nothing they could do could fill that void - that hole left in my life that would never be filled.
I found SUDEP Action after looking on the Internet and accessed their support often, talking and talking and sometimes just crying and they understood. I went to one of their meetings and I admit to feeling very nervous and at one point having to pull over into a lay-by to compose myself. What would I say? How would I cope? At the meeting I found myself with others on a similar journey, a journey that never ends. I learned that there will always be highs and lows along the journey and that only people who have travelled the same way will understand. I have great support from people I’ve met and have made a very special friendship with parents who live close to me, in fact two streets away. How could something I had never been told about take the lives of two young people two streets apart?
I need to keep going and I need to know that what happened to Jack was not in vain, that something can be learned from it to help others. I reported Jack’s death to the Epilepsy Deaths Register and know that from there researchers can look at patterns and highlight gaps in services that will change things. Of course it wasn’t easy to do it, emotionally I mean, but it did help me to write it down, to pass it on to those who could use it in a way that will help to save lives in the future and stop other parents having to go through this. I also knew that there was support available to me, either while filling in the questionnaire or afterwards.
There isn’t enough information about SUDEP and it’s something that can cut a life short, leaving those behind traumatised and full of unanswered questions. I would urge anyone with information to help by providing information to the register. Being part of future research will help me in my grief. The pain will never go away, but I know that’s the price of loving.
Global Conversation 2014