Karen was born in April 1975 and died in February 2012. Although Karen had a learning disability, she was very capable; she lived with us until, needing her independence, she moved into a flat of her own 25 miles away. She had carers who kept an eye on her, and many friends. She spoke to us every morning and every night, sometimes up to five times a day. We saw her regularly and she still had her bedroom at home, which she used when she came home for Christmas and special family events and holidays.
We miss her so very much; she was a big part of the family. The day we were told she had died was the worst day of our lives. We expected to feel the pain of loss for the rest of our lives, but little did we know at that time that the nightmare of the investigation process would last for almost two years.
An interim cause of death was given as bronchopneumonia, yet we felt this couldn’t be right; everything pointed to epilepsy. Although we had heard of SUDEP, we didn’t think it would happen to Karen as she was always so well. We couldn’t quite piece things together. We felt so alone. We tried to discuss our thoughts with the coroner’s office, but they were overstretched and it was difficult to get a response from them. At times we thought there was no-one who could understand or help us.
By chance we met another mother who had lost her son to SUDEP. She literally lived around the corner from us and she was, and continues to be, our saviour; we hope we are hers also and we keep in contact daily. She introduced us to SUDEP Action, persuading us to discuss our concerns with them. They helped us through the following months until the inquest. They listened to us and for the first time we felt that we had people on our side helping us to do the very last thing we could for our daughter. The charity was able to offer the coroner’s office information about SUDEP and provide them with access to expert investigators. Of course it wasn’t easy for SUDEP Action either, they had difficulties contacting the coroner’s office too but they persevered and kept us updated.
At the inquest almost two years after Karen’s death, the cause of death was confirmed as SUDEP. The fight was worth it, we had stood by our daughter in death as we would have in life.
We remain involved with the charity and attend meetings with others similarly bereaved, something that helps to normalise our feelings. The charity supported us then and continues to be there for us if we need them and we, like many of their supporters, will be there for others. No-one can really feel anyone else’s pain, but people bereaved in this unique way can understand more than most. And, knowing you are not alone at your darkest hour can be life-saving.
Linda and Rob
Global Conversation 2014