He is 18 years old and in the 11th grade, living with Dravet syndrome.
His first seizure came at three months old. By his second birthday, he had spent more than 70 days in the hospital. Today, seizures—especially at night—are still part of our reality. Sleep is fragile. Transitions are hard. Simple outings can turn complicated. Life does not move easily.
And yet, Henry loves school. He still chants “school bus” on Saturday mornings. He greets strangers in the grocery store like they matter—because to him, they do. He has taught our family patience, presence, and a kind of strength we never knew we would need.
Our life is messy. It is demanding. It is also full.
The progress being made through the Dravet Syndrome Foundation is not abstract to us—it is personal. New therapies are changing lives. Disease-modifying treatments are in clinical trials. Momentum is real, and it matters.
Tonight is not just a gala. It is a commitment.
Your presence and your support help drive the research that gives families like ours hope—not someday, but now.
Thank you for being part of Henry’s story.
2024 Story
Meet Henry, a resilient 9th grader bravely navigating life with Dravet syndrome alongside his devoted parents, Ross and Polly, and siblings Finn and Millie. From enduring a seizure at 3 months old to spending over 70 days in the hospital by his second birthday, Henry’s path has been marked by challenges. Yet, he embraces school and social opportunities with enthusiasm, often chanting “school bus” on Saturday mornings.
Nighttime can bring its own struggle, with 10 to 15 nocturnal seizures disrupting Henry’s sleep. Walking posesses challenges, sometimes requiring a wheelchair or stroller for longer distances. Although verbally expressive, Henry’s oral communication is limited. He can convey basic needs but faces difficulties in fluid conversations outside the family. Behavioral challenges, like repetitive responses and spontaneous obsessions, add complexity to daily life. These obstacles require our family to get Henry “unstuck” often resulting in untimely arrivals and impactful delays such as almost missing planes and staying places well beyond a traditional visit.
Yet, Henry is an incredible teacher. Through his challenges, he has taught us to be present, patient, and always kind. He finds the person in the grocery store who needs to be noticed and makes a point to say hello. Henry thinks of others before himself. His disease has built a village of support that cares for each other.
Our life is best described as messy yet full—imperfect, but we wouldn’t have it any other way. Support for the Dravet Syndrome Foundation (DSF) is crucial. Every rare disease needs a champion, a quarterback guiding efforts toward a cure. In 2023 alone, DSF awarded 8 new Research Grants, totaling $2.4 million, reinforcing their commitment to making a lasting impact.
Join us at our charity gala, not just for glamour and entertainment, but as a collective effort to make a lasting impact. Your attendance contributes to vital funds supporting research and resources for those battling Dravet syndrome. Together, let’s transform this gala into a beacon of hope for families navigating these complexities, making meaningful strides towards a brighter future.
