SUDEP Action

Making every epilepsy death count
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It is still unreal to me that my daughter who was diagnosed with epilepsy at the age of 10, passed away from SUDEP on November 13, 2016.
We had celebrated her 18th birthday just the month before.

I had stumbled across a short article about SUDEP two years prior, during one of my many searches for any information relating to Janette’s intractable epilepsy. She was having more frequent seizures as the years went on, and additional types of seizures started occurring.

I miss her sweet smile, her sense of humour and wit, her loving heart.
Janette had goals she had set for herself and was accomplishing great things, despite living with epilepsy. She was a senior in high school, a feat I admired. The medications made it difficult for her to concentrate and caused a number of other learning challenges.
She was ready to take on adulthood, independently. She got herself a part time job; she looked forward to her senior prom and graduation. She was considering moving from the east coast to Southern California, a place she truly loved. The vibe, the culture, the beaches, and the climate - she loved everything about it. Her family roots were in Southern California and she felt right at home whenever we went to visit family and friends there.

Janette was soft spoken with beautiful long dark hair and soulful brown eyes. She liked to draw, read, and she had a very soft spot for animals. She had a great laugh and the funniest sense of humour. She absolutely loved music and her baby nephew Joey. We spent a lot of our free time together, watching scary movies or grabbing coffee out, to catch up with each other about our week. I was fortunate to have a teenage daughter who told me she loved me every single day. As her mother, her caretaker, and her best friend, I can’t begin to express the sorrow and heartache I live with every single day since I found her. SUDEP took my precious girl; I miss her every second of every day.

She is survived by her brother Joseph and his wife Alyssa. There were many game nights, holidays, jokes, and love shared by them. Janette loved playing with her baby nephew, Joey, and reading Dr. Seuss books to him. My heart breaks for her sweet boyfriend Grady, and her best friend Clementine.

I’m hoping my beautiful daughter’s short life was not in vain, as I donated her tissues and samples to medical research. I have high hopes that they will find something that may help other patients or neurologists in any way possible.

Please educate anyone you know who has any kind of seizure disorder about SUDEP. It is unfortunate that SUDEP isn’t a standard conversation in the doctor’s office. Not many people realize that there is a very real risk that your child, spouse, sibling, grandparent, friend…can die from this.

Margaret (Janette’s mom)


We understand that this My Story (and any of our other My Story articles) can stir up some memories and emotions of your own experiences.

If you need to talk, please do contact our Support team. Its free and confidential.

[email protected] or 01235 772852.

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