Stories of Strength from the KCNQ2 Community
KCNQ2 affects children around the world, and every family's path looks a little different. Here you'll find honest accounts from the parents, caregivers, and loved ones who live it every day — and who refuse to stop fighting for a better future.
Scotty Sims, Executive Director and co-founder of the KCNQ2 Cure Alliance, was featured in The Story Collider through the Chan Zuckerberg Initiative (CZI) Rare As One program. In her story, “She Is Nesba,” Scotty reflects on her daughter Harper’s journey with KCNQ2-DEE and how that experience inspired the creation of a global community dedicated to support, advocacy, and research for KCNQ2-related disorders.
Kiara’s Story
Kiara is our first born child born in April 2012. We were so excited to be having a baby & even more so to find out we were having a…
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Regan’s Story
My son was born via C Section on October 18th, 2017. Everything seemed ok, but I did notice that he would get red and stiff for a few seconds, then…
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Amelia’s Story
My Brother James (by Amelia, age 12) Most people when they find out that my brother has a disability tell me how sorry they are, and how sad that is…
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Afton’s Story
Afton was born Aug. 17th, 2015 weighing 8 lbs 12 oz – beautiful and perfect. When she was two days old, and 5 hours after leaving the hospital, Afton had…
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Nina’s Story
We first notice our daughter´s spasms the week she turned 14 months old. They come in clusters and we didn´t get too much concerned until it gets frequent, after almost…
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Faith’s Story
Faith is a spunky, humorous and loving child who is curious and full of laughter. She is nonverbal but uses a dynavox, cards, and gestures to tell us what she…
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