Kim’s Story
SUDEP took my sister Kim, suddenly at the age of 24. It left a hole in our family and a mark that endures, all these years later.
Gentle, generous and full of life, Kim was born with a lazy eye and early in her school years, we began to face the challenges of accommodating her learning disabilities which we recall seemed to be a bigger factor to her parents than to her. Kim was 5' 9" tall with a sturdy build and had beautiful dark brown hair and blue eyes. She was a gentle loving person with a kind demeanour and she regularly displayed her artistic bent and her sense of humour. By her early 20’s the challenges that she had earlier in life had given way to a young woman beginning to take on the world, with a deep interest in the classic works of Shakespeare, as well as the more modern works of her rock hero Billy Idol. Her stated interest in pursuing the field of law was surprising and exciting.
She loved the outdoors and while she lived at home, the house was always full of animals. We lived in the country, but when an adult she wanted the city life with its freedom and conveniences and easy access to her host of friends. She would enjoy regaling us with stories about people and events which she witnessed both night and day in downtown Oshawa, where she had her apartment.
It was one evening at our country home where entirely out of the blue, Kim suffered a grand mal seizure. At the time we were all terribly frightened not knowing what had happened, until the diagnosis soon afterward. The dark cloud that had suddenly appeared over Kim’s life and that of our family made it difficult to live peacefully as before, now being in a constant state of anxiety, even fear, never knowing when the next seizure may occur.
Her epilepsy medications caused her considerable distress and we can only surmise that current treatments, with advancements made over the years, are much more tolerable for those afflicted. If this is so, Kim might be with us today as she would have more readily taken the medication as prescribed. Likewise, at the time had we been aware of the possibility of Sudden Unexpected Death from Epilepsy (SUDEP) to which she succumbed, it is virtually certain that her behaviour and lifestyle would have been further modified to counter such a grave risk.
We feel deeply for the 1 in 100 people who are presently afflicted and their families. Daily life can be much more difficult than the public could imagine. It’s imperative that we promote broader awareness of this disorder and its deadly risk, while at the same time rallying to raise funds to be applied directly to research to find a cure for epilepsy. This year, we will climb Kilimanjaro in Kim’s name. Never one to hold back, we know that she will be there with us in spirit.