SUDEP Action

Making every epilepsy death count
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Kim was a beautiful and caring girl, with a great sense of humour. She was very popular and well loved by friends, family, patients and colleagues of our local hospital, where she worked as a staff nurse. Kim was 23 years old and was studying for her nursing degree.

Kim was a loving daughter; we were more like sisters and close in every way. Kim had her first and only seizure on Easter Sunday, 2006. She was diagnosed with epilepsy about two months later.
The Saturday morning of October 7, 2006, when we discovered Kim in the bedroom face down, not moving, was to be the start of a different life. The old familiar one ended and a new, desperate, unknown one began. In the early weeks, there was a lot to do to keep my mind busy. Then the void sets in; people go back to their normality. I was existing, barely registering life. 
As time moves on, people expect you to be getting on with your life. Many would say: “well you still have another daughter, and a granddaughter to live for”. I felt like screaming that they had no idea what my life was like. You are not supposed to lose your child, it’s the wrong order; I would walk away fighting back tears. Grief gradually changes so subtly that you don’t realise it’s happening. The pain of the early days lessened; there were still bad days, but I functioned better.
I found SUDEP Action on the Internet and attended their meeting where I met others who’d lost children. We talked, laughed, cried and supported each other; we understood how we alone felt. Before I found SUDEP Action, I was in a deep dark place and by talking to them I felt I was not alone. For me it was the start of hope; gradually, albeit slowly, I started to live more than exist. Although, it is good to know that I can access support at any time and for however long I may need it.
So now I try to move forward with the intense love I have for Kim and the wonderful memories we had together. I try my best each day to make her proud of me and live my life as best I can.
Although Kim died eight years ago, I am still on that journey that began with her death. It’s like a roller coaster, with highs and lows. I now realise that she’s not coming back so I have reluctantly accepted it, but I will never like the fact that I lost my dear daughter to SUDEP, something Kim and I had never heard of.
Kim would want me to carry on; you never stop loving your children even when they are no longer with you. There is no pattern or timescale with grief. Like each of us, our experiences of grief can be so different. With support, love and enough time, we live through grief to the best of our ability. We will never forget or stop loving those we lost to epilepsy. Life without my wonderful daughter will always be a very challenging one.
Tina Larkworthy