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.

Matilda

Matilda is a beautiful, happy, and loving little girl who makes our hearts sing. She had her first tonic-clonic seizure at 18 months old, but even before that, we noticed her eyes would ‘flutter’ from just a few weeks of age. At around 3 years old, Matilda was diagnosed with KCNA2 epilepsy. She is currently the only known case of KCNA2 in New Zealand.

Matthew

Matthew was born in Helena, Montana, and from the start, it was clear something was medically complex. No amount of preparation could have readied his family for the unpredictable journey that lay ahead. Matthew began having infantile spasms at birth. By four months old, tonic-clonic and focal seizures had started.

Michael & Matthew (Twins)

These twin boys are fun, lovable, and always up to a bit of mischief.

Nele

Nele was born after a healthy, uneventful pregnancy but her first seizure came the very day she entered the world. That moment marked the beginning of a long road of uncertainty.

Nieves

Nieves began having seizures at 18 months old. She was diagnosed with KCNA2 gain-of-function epilepsy when she was just 2 years old. Her treatment began with Keppra, then shifted to Briviact after six months. She currently takes Vimpact as part of her seizure management.

Nikoloz (Niku)

I’m Niku’s mother, writing to you from Georgia, Eastern Europe. My son is 3 years old. He has microcephaly and tetraplegia affecting all four of his limbs. He’s completely contactless meaning he cannot connect with us in the ways most children can.

Nya

Nya faces a complex medical picture. In addition to her KCNA2 diagnosis, she also lives with a mitochondrial mutation, a heart murmur, poor vision, and bilateral hip dysplasia.

Paula

Paula is a beautiful, happy, and loving young woman. She was diagnosed with KCNA2 epilepsy in 2015 after years of uncertainty. That diagnosis brought her family both answers and a renewed sense of direction.

Pedro

Pedro is a loving teenager with a beautiful laugh and eyes like enormous windows full of curiosity about life. He was diagnosed with a KCNA2 mutation at age 7.

Roman

Roman was born with a KCNA2 mutation that includes both gain- and loss-of-function components. From the moment he entered the world, it was clear his journey would be unique. He moved constantly in all directions, struggled to latch for feeding, and needed special positioning just to fall asleep.

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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