Last January, the Hope for HH community lost an incredible friend. Celia Alison Strong was only 26 when she passed away unexpectedly from SUDEP. SUDEP is defined as “Sudden Unexpected Death in Epilepsy” of a person who is otherwise healthy.
Celia loved music, especially musical theater. She performed in the chorus of five CYT shows, one Starlight show, and one Gateway show. She used her crystal clear voice to sing harmonies in the worship band at Bethesda Covenant Church. She also sang solo, accompanied by her dad on piano, for special music at church services. She competed perennially in Young At Heart Idol. Celia regularly attended Irish Fest in Milwaukee with her mom; Renaissance Fair in Bristol with her mom and Matt ‘n Emma; and she and her dad frequently attended concerts together. Two of her favorite songs were “Where I Belong” by Building 429, and “That’s What Scars Are For” by Mandisa.
Celia was a reader, a writer, and an intricate doodler. With her mom, she enjoyed weekly trips to Rockford Public Library, Scrabble nights at Meg’s, and high energy water workout at the Y. She also enjoyed bowling at Lousy Bowler’s League and regular trips to Farmer’s Market in season.
Celia loved baking, especially cookies. She created a delicious original recipe, Cherry Lime Frosted Cayenne Cookies. She also baked heart-shaped peanut butter dog treats, to the delight of any dog that ate them. She excited her own cats, Tammy and Pumpkin, by making cat treats of chicken, sardines, and salmon.
She touched many lives with her quirky humor, unfiltered and uncannily insightful observations, ready encouragement and super imagination. She looked for ways to help as she was able.
Some of us in the HH Community had the honor and the joy of being friends with Celia on Facebook. It is never a substitution for being able to spend time with each other – but with this small diverse group, sometimes that is the best we can do. I was one of the lucky ones that got to see Celia’s posts and share in her achievements, and the moments that were important to her. I miss her funny posts, her smiles, and her love for her friends and family.
SUDEP is a very difficult topic to discuss and the overall risk is not yet well defined in the HH community. I can say, we have heard of too many cases in our small community in the last year and a half. Each year, more than 1 in 1,000 people with epilepsy die from SUDEP. This is the leading cause of death in people with uncontrolled seizures. No one is sure about the cause of death in SUDEP and it may differ between cases. Some researchers think that a seizure causes an irregular heart rhythm. Other research has shown that breathing difficulties following a seizure lead to death.
Hope for HH believes we need to better understand SUDEP and its prevention as it relates to HH, gelastic/dacrystic and other seizure types, and what can we do to reduce the risk of SUDEP for our loved ones.
We would like to thank Lisa Strong, and the rest of Celia’s family, for allowing us to share and honor Celia’s memory in this blog. Celia was compassionate, courageous, and living her life to the fullest extent possible. She is missed by her friends and family, as well as many of us in the HH community.
If you have had a loved one, or know of anyone in the HH community, that has passed from suspected SUDEP, we would like to hear from you. In order to better understand SUDEP and exactly what the risks are for our community, we are working with clinicians and researchers to collect and evaluate the data. We understand it may be difficult to share the details, but we always respect your wishes when it comes to how much detail is shared with any researchers involved. Please feel free to reach out to Lisa Soeby at firstname.lastname@example.org.
If you would like to know more about SUDEP and the risks, you can go to Epilepsy.com, Danny Did Foundation, SUDEP Aware, or the SUDEP Institute. Hope For HH also has the following resources available: