Those who knew and loved 9-year-old Laney McGowan of Sayville often describe the young girl, who died last December after a lifelong battle with Dravet syndrome, with one word: fighter.

McGowan’s fighting spirit, which guided her through life, was felt by her father, Jason McGowan, and one of her sisters, Jayde, as they peddled across New York City during the 40-mile-long Five Boro Bike Tour on May 3 to raise awareness for Dravet syndrome, the genetic epileptic syndrome Laney battled.

“It was good to do something so hard for my sister because she was such a strong little girl,” Jayde McGowan, who hadn’t ridden such a long course before, said.

The bike tour looped the McGowans around New York City, from Battery Park in Lower Manhattan, straight through Central Park, before quickly stopping in The Bronx and riding along the East River in Upper Manhattan, then Queens and Brooklyn. The pair finished their ride in about 4 hours after exerting their last bit of energy climbing the Verrazano-Narrows Bridge, which they said was made more difficult by gusty winds.

Despite the challenges, including cold weather and soreness, Jason, an avid biker who completed the Five Boro Bike Tour two years ago, said he persevered with Jayde, knowing they were doing it for Laney.

“Laney was as resilient as they come,” Jason McGowan said. “She handled it for nine years in and out of the hospital… that gave us inspiration to finish this ride.”

Throughout her life, Laney McGowan’s resiliency inspired those in her community, especially when she returned home in March 2023 after a two-and-a-half-month hospitalization following complications from the flu and COVID-19, followed by a stroke.

Dravet syndrome, the genetic epileptic condition Laney McGowan had, is characterized by frequent and prolonged seizures triggered often by high body temperature, and causes developmental delays, speech impairment, sleep disturbances, and other health problems.

Despite all of this, loved ones said Laney McGowan never gave up living her life to the best of her ability and was deemed by some classmates “the queen of Lincoln Elementary School,” where she attended.

Before the bike ride, Jason and Jayde McGowan sold purple T-shirts reading “Ride for Laney” to family and friends, some of whom wore them along the route in support of the cause.

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