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.
Lakelyn Strong
Where do I begin …. First I will start off by saying Lakelyn is a Di-Di twin. Meaning herself and her twin sister was conceived on two separate days. Overall…
Read this story →
Four of us have KCNQ2 and we are living our best life
Before KCNQ2 was diagnosed officially- we highly suspected that our 3 kids and their dad had this condition. Diagnosed with BFNC as a child my husband lived his life with…
Read this story →
Aaron
This is my step-son , I have been in his life since he was 6 years old and I love him so much, on March 21st he turned 11. He…
Read this story →
Delilah’s story
Delilah started having seizures on day 3 of her life. She was subjected to test after test and was placed on many different medications with no apparent cause. At 7…
Read this story →
La joie de vivre
Je m’appelle Léon et je suis né le 24 septembre 2020 en France. Ma venue au monde n’est pas toute rose, mes premiers jours de vie sont bercés par les…
Read this story →
Kelly’s Story
Hello, my name is Kelly. Within 24 hours after I was born I started having seizures and no one could figure out why. After a month in the NICU and…
Read this story →