Laney McGowan, Sayville girl whose battle with epilepsy inspired others, has died at age 9

Laney McGowan, the young Sayville girl who inspired others through her yearslong battle with severe epilepsy, has died at the age of 9.

Laney died on Dec. 12. Her death was confirmed by her parents, Jason McGowan and Tiffany Rowan, veteran coaches of the East Islip and Sayville varsity softball programs, respectively. They said she died at South Shore University Hospital in Bay Shore after a seizure.

Laney was 4 months old when she suffered her first seizure. More followed, sometimes several per week or none for months. They lasted seconds or hours.

“There’s good news and bad news,” Rowan recalled the doctors telling her when Laney was an infant. “We know what it is, but it’s going to be a constant cocktail of medications.”

Doctors told the family that Laney had Dravet syndrome, a rare genetic condition whose symptoms can include seizures as well as developmental delays and movement and balance problems. Treatment can help manage the symptoms, but Dravet is a lifelong condition and as many as a fifth of the people diagnosed with it die of seizures or seizure-related accidents.

The East Islip and Sayville communities rallied to help the little girl, who was a scion of softball royalty — her grandfather Jim McGowan was the winningest coach in the state at Bay Shore High School, and her other relatives play or coach.

Organizations like the Suffolk County Softball Coaches Association hosted fundraisers for her, and in April 2023 the Bayport-Blue Point and Sayville softball teams recognized her in a special pre-game ceremony. Earlier that year in Sayville, more than 100 friends, relatives and community members gathered to throw Laney a welcome-home party after a monthslong hospital stay.

Kayla Varga, East Islip High’s senior first baseman, said in a phone interview that Jason McGowan had shared some of Laney’s milestones with the teams over the year.

“One thing I learned from that was to always live in today and fight for today,” she said. This spring, she said, she and her teammates plan to “make this season in honor of Laney.”

McGowan and Rowan recounted memories of their daughter's short life.

In the summers, McGowan said, Laney wore an ice vest because heat triggered seizures. Water also could trigger seizures, so the family didn’t often take Laney to the beach.

Going to softball games meant lugging oxygen tanks. Even the excitement of playing catch in the backyard was a potential trigger, he said.

“More often, we did it inside with a Nerf ball,” he said.

McGowan showed off an early photograph of Laney as a toddler, perched on his shoulders, her hands gently pressed to the sides of his bald head. Years later, when Laney grew too big and her condition made it risky for him to hoist her up, he said she’d demand the same treatment for her younger sister Stella: “ ‘Daddy head, daddy head,’ she’d say.” Laney’s Christmas stocking hung nearby with the other children's as he spoke.

Rowan recalled the time she took Laney to one of her sisters' volleyball games.

“We’re playing Wyandanch, and in between games, all of a sudden she has the girls from Wyandanch throwing and catching with her. … By the time we were done, these girls were playing hide and seek with her in the hallway," Rowan said.

In addition to her parents, Laney is survived by siblings Abby Rowan and Stella, Trey, Renee and Jayde McGowan.