CAEL'S JOURNEY

Our names are Reagan and Matt Hill, and we established the Cael Hill Foundation this spring in honor of our courageous 6-year-old son, Cael, who lives with Dravet syndrome.

Dravet syndrome is a rare, severe, and lifelong form of epilepsy that begins in infancy. It causes frequent, prolonged seizures that are often resistant to treatment, along with developmental delays, an increased risk of SUDEP (sudden unexpected death in epilepsy), and a host of other serious challenges. The mission of the Cael Hill Foundation is to support the Dravet Syndrome Foundation’s research grant program — funding critical, life-changing work in pursuit of a cure and bringing hope to families like ours.

Last year, our Steps Towards a Cure 5K and Family Fun Walk at McDade Park raised over $52,000 for the Dravet Syndrome Foundation — a powerful demonstration of what our community can achieve when we come together.

About Cael:
Cael had his first seizure at just four months old. By eight months, he required an emergency life flight to the Children’s Hospital of Philadelphia where a team of pediatric neurologists suspected Dravet syndrome. Genetic testing confirmed a mutation in the SCN1A gene and the diagnosis was made. By age four, Cael had been life-flighted to CHOP three more times.

His journey includes countless ambulance rides, ER visits, and hospitalizations due to prolonged seizures and complications. Today, Cael attends kindergarten at Moscow Elementary Center supported by multiple aides. He receives frequent speech, occupational, and ABA therapies. His nurse, Miss Tina, accompanies him to school each day to monitor for seizure activity and administer rescue medication if needed. She also tracks his temperature closely to prevent heat-related seizures and ensures he wears a cooling vest when outdoors on hot days. In addition to his daily epilepsy medications, Cael follows a strict, ketogenic diet through CHOP which is designed for difficult to control seizures. Each one of his meals and snacks must be proportioned and precisely weighed using only ingredients allowed on the program. Through all of this, Cael remains a joyful, resilient little boy with an indomitable spirit!