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.

Emerson

Emerson was born two weeks early in January 2018 via induced labor due to concerns about his growth. His delivery was smooth, with no complications.

Fride

Fride had her first seizure at 7 months old. Shortly afterward, her family received confirmation that she had epilepsy. By the following summer, genetic testing revealed a KCNA2 mutation with loss-of-function, a turning point that brought both clarity and complexity.

Giana

My daughter Giana is 28 years old. She had her first tonic-clonic seizure at just six months old. After that, she sometimes had up to 22 seizures a day, along with other seizure types. We tried over 14 different medications and had many hospitalizations before her seizures were somewhat better controlled, but never fully.

Gwendolyn

Gwen’s story is still unfolding, but already she has taught us so much about resilience, hope, and the strength of awareness. We share her journey not just to document it, but to connect with other KCNA2 families, with researchers, and with anyone walking a similar path. We believe that the more we learn together, the closer we all come to better treatments, and brighter futures, for our kids.

Honzík

Honzík is a sweet, smiling boy who has been given a few more obstacles in life than most children. As a baby, he was very communicative… he smiled at everyone, and everyone loved him.

Hridya

This bright and curious toddler reached her early developmental milestones on time until 6 months old, when she contracted COVID. Shortly after recovering, her parents began noticing troubling changes.

Ilana

Ilana has always been kind of a puzzle. She never really fits any of the labels she’s been given. Her seizures are hard to describe. They’re different every time and they don’t match seizure definitions very well. Medications affect her differently than expected, too.

Inés

Inés was born in 2013 as part of a twin pregnancy. Early on, her development didn’t follow typical milestones, and her family began a long and determined search across multiple hospitals in Spain.

Leo

When Leo Simon-Kaman was born at the end of 2019, his parents experienced the joy and awe of becoming first-time parents for one precious hour.

Madison (Mady)

Madison, known to her family as Mady, was diagnosed with KCNA2 nearly three years ago. Now 12 years old, she also carries several additional diagnoses, including Lennox-Gastaut Syndrome (LGS), intractable epilepsy, congenital hypotonia, ataxia, gait abnormalities, tremors, global developmental delays, low muscle tone, anxiety with tics, and suspected vertigo.

Still searching for something?

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