Sometimes people ask what life with Dravet syndrome really looks like. This video holds pieces of our story — ambulance rides, hospital rooms, seizures, and moments that changed everything. When Rosie was diagnosed with Dravet syndrome, we were told there was a 1 in 5 chance she might not reach adulthood. That statistic never leaves your mind as a parent. But what people don’t always see is the other side of that story — the strength, the resilience, and the fierce love that carries families lik
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Sometimes people ask what life with Dravet syndrome really looks like. …
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As we observe #DravetSyndromeAwarenessMonth, we are honored to share Jake's story, a courageous individual who has been living with Dravet syndrome since his first seizure at the age of 7 months. Jake, now 26 years old, has demonstrated incredible strength in his ongoing battle against this condition. During our Externally-Led Patient-Focused Drug Development Meeting last year, Jake's mother fearlessly shared their family's journey, shedding light on the challenges they have faced and continue t
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