Meet Our Kids

Real families. Real love. Real strength.

Every child with KCNA2 has a story and every story matters.
Here, parents have shared their children’s journeys in their own words. Some stories are long, some short. Some focus on medical details, others on personality, laughter, and resilience. Together, they paint a picture of what it means to live with KCNA2: the challenges, the small victories, and the love that carries families through.

As you read, know that you’re not alone. Whether you’re just receiving a diagnosis or you’ve been navigating KCNA2 for years, these families walk beside you. Their stories are here as a hand to hold, a reminder of community, and a testament to the strength of our kids.

Sacha

Sacha was born at term after a healthy pregnancy, with no complications. He reached early milestones on time, walking at 14 months. But just before age two, subtle signs began to appear. He fell often without using his hands to catch himself. He became fixated on lights and spent long stretches sitting and looking at books.

Siyeon Kim

This bright and creative young girl was born in 2010 and diagnosed with a KCNA2 mutation at Seoul National University Children’s Hospital in 2017. Her symptoms began with febrile seizures at just six months old, followed by eye-blinking seizures and occasional grand mal seizures especially during illness or fatigue. For the first two years, she remained seizure-free on epilepsy medication, but over time, the condition evolved.

Trey

Trey is 13 years old and currently in 7th grade. He was diagnosed with a KCNA2 mutation when he was 7. Trey is medically complex and he likes to keep his family on their toes! Every day brings something new.

Vega

Vega came into the world almost without warning… months before we were ready. It was 2020, a year already surrounded by fear and uncertainty. With COVID everywhere, and Vega’s rushed arrival, we found ourselves bringing home a two-kilogram baby girl in the middle of a global storm.

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Let’s keep going. We see you. We’re with you. And we’re not giving up.

KCNA2 Epilepsy Foundation | A 501(c)(3) nonprofit organization