<div>My daughter's name is <strong>Kaylee Marie Benitez</strong>. She is 6 months old and has KCNT1 epilepsy. She was diagnosed at 3 months old. We've been discharged about 2 times at Millers Long Beach from December to January, and now we're at UCLA Westwood from January till March. As parents, we've been challenged with many medications and around-the-clock care for her. She's had many seizures, and we're trying anything we can to help control them.
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<div><strong>KCNT1 helps regulate how brain cells communicate.</strong> Variants in this gene can cause a range of symptoms—from difficult-to-treat seizures to milder challenges—and every person’s path is different. KCNT1-related epilepsy is an ultra-rare, severe genetic disorder caused by mutations in the KCNT1 gene, which leads to overactive sodium-activated potassium channels in the brain. This dysfunction causes excessive neuronal activity, resulting in early-onset, often treatment-resistant seizures that can significantly impact a child's development.
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Shahrzad Ghaemi

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Support Kaylee's Fight Against KCNT1 Epilepsy

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Support Kaylee's Fight Against KCNT1 Epilepsy

Still $3,340 to go. Help us build momentum.