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.
James’ Story
To say it has been a long a winding road would be an understatement. From the moment in 2005 when we welcomed our seemingly healthy baby boy, to the time…
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Sadie’s Story
A case of Benign Familial Neonatal Epilepsy (BFNE), in which the KCNQ2 genetic mutation is inherited. Sadie Kate was born on August 30th, 2013. We fell in love with her…
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Emma’s Story
On October 5th, 2012 in the early hours of the morning our precious Emma was born at Caldwell Memorial Hospital in Lenoir, North Carolina. I had a scheduled c-section for…
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Gillian’s Story
Our beautiful baby girl Gillian entered into our lives on December 29, 2008. Although she was initially quiet, her newborn cry soon filled the air. We were overcome with joy…
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Harper’s Story
In May 2011 Harper was born and seemed to be in perfect health, although she was unusually quiet. When Harper was two days old, we noticed her first tonic-clonic seizure….
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Eric’s story
Eric was born an apparently healthy little boy on the 22nd July 2013, but just 21 hours later he had his first seizure. He spent the next 6 weeks in…
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