This is our beautiful and beloved daughter, Jayne Lyndee Andrews, who was born on July 6, 1995 and who died on January 7, 2016 of SUDEP. My husband, Stewart (her step-dad), and I had never even heard of SUDEP before it took our sweet 20 year old girl.
Jayne had PDD-NOS (on the autism spectrum). She was high functioning. She had learned to accept who she was and we celebrated her uniqueness. She was very bright, talented and creative. In her words, she "just took longer to learn". She had graduated with a regular Grade 12 in June of 2015. Jayne was living with us while taking American Sign Language (ASL) classes. She was proud to be working towards her goal of being an ASL Interpreter for the deaf and hard of hearing. Her goal was to work with deaf children in a school setting. She left behind many short stories and a hand written novel. Most of her writing features wonderfully quirky characters with physical challenges.
Jayne had a total of 7 seizures in her lifetime (of which we are aware) beginning in 2007 when she was in grade 5. She had 2 seizures as an adolescent, when she was in the process of weaning off of Valproic Acid and onto Lamotrigine, upon the advice of her neurologist. She had a seizure in June of 2014, when she had run out of her meds. That is when she moved back home to live with her step-father and myself. The next (and last) year and a half of her life were full of achievement, love, peace and happiness.
The day that she died, Jayne had chosen to stay home alone instead of coming along with me to the city for appointments and shopping, which I do know that every 20 year old has the right to do.
I had double checked with her about coming when I said "good night" the night before, then I left the next morning without waking her to say "goodbye". I remember standing in the hallway, considering it, but deciding to let her sleep.
When I returned home that evening, I found her where she had died in her own bed, some time between when she had gone to bed the night before on the 6th and when I returned on the 7th. She was still slightly warm, but I could tell that she had been dead for quite some time. She was covered with a heavy quilt and was in a smallish room with the door closed. The medical professionals who attended her and the coroner would not even guess at a time of death. As I have read is common in SUDEP, she was face down in her bed.
I will never stop regretting my decision to let her sleep in when I left that morning, for not becoming overly concerned when she didn't answer my texts that day, and for not coming home sooner.
I have lost many special people in my life. My Mom died when I was 20, my Dad died (at 83) 2 years ago, and my sister's son died when he was just 19 in a tragic car accident. None of these deaths prepared me in any way for the loss of my dear daughter. My husband and I are still reeling from the shock of our loss …
I want to add that my husband and I love each of our other 6 (2 of mine, 4 of his) children (ages 18 - 26) equally, but for the last year and a half, we had focused much of our time and effort on Jayne, because she needed it, and she had blossomed.