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.

Aaron

Aaron is a joyful, strong-willed kid. He perseveres through his challenges. He enjoys playing in water, boating, and water-tubing. He likes roller-coasters and going fast. He likes airplanes and trains. He is very creative and often can be found painting. He is also a “fixer” using tape, or tools to fix something.

Aggelos-Paisios

From the moment Aggelos-Paisios was born, his family noticed something wasn’t quite right with his psychomotor development. Though his first year showed some positive signs, everything changed after starting medication: his clinical condition declined, his muscle tone worsened, and he lost his laugh, his communication, and his eye contact.

Alex

Alex is incredibly social and loves being around people. She has a part-time job that brings her joy and purpose. Her smile is both beautiful and contagious, and everyone in the community lights up when they see her.

Amaia

Amaia’s journey began the day she was born. Just eight hours after delivery, she experienced her first seizure. Her parents had no idea what was happening. She was placed under observation in the hospital, and soon after, had two more seizures.

Amber

Amber is now 23 years old. She had her first recognized seizure at age six, though looking back, her family now believes she had been experiencing absence seizures even earlier. For years, Amber lived without a diagnosis trying countless medications and enduring frequent hospitalizations for uncontrolled seizures. It wasn’t until she was 16 that her KCNA2 diagnosis was confirmed. Her variant is more severe, and her seizures remain challenging to manage.

Antonin

Antonin was born in Voiron, a town in the Isère region of France. He is the youngest in a blended family, surrounded by his mom Pascaline, dad Fabien, and older siblings Lisa and Robin.

Avery

Avery loves to move! He enjoys swinging at the park, going on runs and walks in his jogger, summer camping trips, and exploring new places. He also has much-cherished cuddly days, huge smiles, and some rare but amazing giggles.

Cory Claire

After what felt like a healthy full-term pregnancy, Cory Claire was born via emergency C-section after 25 hours of labor. Just 30 seconds after birth, she began experiencing violent seizures. Doctors immediately began brain cooling and placed her in a medically induced coma; she had entered status epilepticus. For her first week of life, Cory remained heavily sedated, but the seizures continued. Her first EEG was deeply concerning, and despite multiple medications, nothing seemed to stop the storm.

Damian

Damian was born with an extreme startle response to touch, sound, and light. Initially diagnosed with hyperekplexia, he began experiencing infantile spasms at 3.5 months of age. A clear MRI and lumbar puncture led his medical team to pursue genetic testing, which ultimately confirmed a KCNA2 diagnosis in March 2018.

Elijah

Elijah was born in 2012 after a full-term, spontaneous delivery. At five months old, he began experiencing focal seizures most often during the transition to sleep. His family sought answers quickly, leading to multiple hospitalizations, two MRIs (both showing no abnormalities), and three rounds of genetic testing. Finding a treatment that worked was incredibly difficult. Elijah became drug-resistant early on, and nothing seemed to stop the seizures.

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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