Sayville family rides in Laney McGowan’s memory, raises Dravet awareness

Jason McGowan and his daughter Jayde turned a ride through New York City’s five boroughs into a public tribute to Laney McGowan, the Sayville girl they lost last December after a lifelong battle with Dravet syndrome. On May 3, they finished the 40-mile TD Five Boro Bike Tour, using one of the city’s biggest events to keep Laney’s name tied to awareness, research and support.

The McGowans did not ride alone in spirit. They sold purple “Ride for Laney” shirts, and supporters wore them along the route as the family raised about $900 for Dravet syndrome awareness. The effort gave their loss a purpose beyond remembrance, drawing attention to a rare disease that can bring frequent, prolonged seizures and serious developmental and physical challenges.

Dravet syndrome is a rare, lifelong developmental and epileptic encephalopathy, with an estimated incidence of about 1 in 15,700. Most patients have an SCN1A gene mutation, and seizures often begin before 15 months of age, usually in infancy. Illness and fever are common seizure triggers, which made Laney’s medical history especially wrenching for her family. Blythedale Children’s Hospital said Laney was diagnosed at four months old after her first seizure, and later suffered a 28-minute seizure in December before a life-threatening hospitalization.

That December crisis came after Laney was hospitalized on Christmas Eve 2022 with complications affecting her heart and lungs. She later returned home in March 2023 after a two-and-a-half-month hospital stay that followed the flu, COVID-19 and a stroke. The family’s ride carried that history into public view, not as a private memory alone, but as a reminder of how much daily burden Dravet syndrome places on children and parents alike.

The school community has kept that memory alive, too. At Lincoln Elementary School, where Laney was known as “the queen of Lincoln Elementary School,” her absence still resonates with classmates, teachers and neighbors in Sayville. The McGowans’ finish in roughly four hours, despite gusty winds and the climb over the Verrazzano-Narrows Bridge, gave the day its symbolism: a hard route completed in Laney’s honor, across Manhattan, The Bronx, Queens, Brooklyn and Staten Island, with her story reaching far beyond Suffolk County.