January 16, 2006 is the day that changed our family forever. It was the day we lost our vibrant, caring and precious, nineteen year old, only daughter Kate, and the loving sister of our three sons. We had only just left home, taking our seventeen year old son to the town hall for a presentation for his upcoming exchange year in Denmark, when we received a frantic phone call from our fifteen year old son, saying he couldn’t wake Kate, even though the alarm kept ringing for her to get up to go to work. A week later, instead of farewelling our son for an exciting year away we were farewelling our beautiful daughter for ever.
She had been diagnosed at the age of six with epilepsy that mainly affected her in the REM stages of sleep. We were told she would grow out of it, and she did by the age of twelve. However, at sixteen it was to return in an adult form, again mainly affecting her when she had gone to bed. Sometimes she was aware that a seizure was about to happen and would get up to tell us, but once she slipped behind the door and we couldn’t reach her. For safety reasons, she began to take a mild anti-seizure medication twelve months prior to her dying and this had easily become part of her regular daily routine. She only had seizures when she was particularly tired and especially if the weather had been hot.
Epilepsy never stopped Kate living life to the fullest, studying nursing, working part-time at Subway and enjoying her family and many friends. She was so very comfortable with who she was and having epilepsy was part of that. She even counselled a young co-worker who had been diagnosed with epilepsy.
So, why? No-one ever told us that she could die from this, nor had we even heard of SUDEP till after her death. I often ponder, should we have known this? Would we have allowed her to experience all those childhood joys of sleepovers and school camps? Would we tell another family with a child who had epilepsy? Of course we would.
We miss, so much, the joy and laughter she brought us, as her parents, her brothers and the many friends she had made. We only hope in telling Kate’s story, awareness will be raised and other families spared the grief and heartache our family has endured.
Geoff and Wendy Leigh
Global Conversation 2011