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.
Madison’s Story
Our journey started on May 13, 2010. Madison was born on her due date, during her birth she got stuck on my pelvis and had a hard time coming out,…
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Brecken’s Story
Brecken came into this world November 5th, 2018 and was originally admitted to the NICU due to low blood sugars. What should’ve been a short easy stay shortly turned into…
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Alayna’s Story
Ah, where do I even begin!? Well, a good place to start is the very beginning I guess. My pregnancy was a pretty normal pregnancy. I did have late-term gestational…
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Ella’s Story
Ella’s KCNQ2 diagnosis brings many fears to our family; fears of the next seizure, of the effects of a medication change, of the results of a blood draw, and the…
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Charlotte’s Story
My Princess is called Charlotte. She is 10 and was diagnosed with KCNQ2 in 2018 after 9 years of horrific seizures since day 3 of life and in utero. I…
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Nolan’s Story
Nolan was born early on the morning of February 03, 2018. He was born blue and was having difficulty breathing. After the doctor and nurses stabilized him, he was rushed…
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