Laney McGowan has Dravet Syndrome, a severe form of genetic epilepsy, and she's back home after a long hospital stay

It was a party in Sayville on Thursday, and well over 100 people were invited to celebrate the recovery of a girl whose parents say has "sass" and spirit.

Family and friends had gathered at the home of Laney McGowan, a 6-year-old with a severe form of genetic epilepsy called Dravet Syndrome, who was returning home from an extended hospital stay for the first time since the holidays. Her recovery has been nothing short of miraculous, said her parents.

Her daughter had a “rough November,” her mother said, suffering a few long seizures and pneumonia. Laney came down with the flu and went into respiratory and cardiac failure on Christmas Eve. She later suffered a stroke while on life support, causing paralysis on her left side.

Now, however, although Laney has a wheelchair — purple, her favorite color and the color for Dravet Syndrome — she’s walking and playing.

Two months of rehab

“We went to Blythedale Children's Hospital and rehabbed her there for about two months and she's doing phenomenal,” said Tiffany Rowan, 42, Laney’s mother. “And it's all her. It's because she was determined to get better.”

Born to two teachers in a blended family with six children, her parents' connections with the communities they work in have created a force that's rallied around the young girl. Plus, Rowan’s family has lived and been involved in the Sayville community for generations.

"We're both varsity softball coaches. She's at Sayville, I'm at East Islip," said Jason McGowan, 50, Laney's father. "Especially the Sayville community, but the Bayport-Bluepoint community, Amityville, Bellport, East Islip, they've all come through."

A GoFundMe to help cover Laney's medical expenses posted in December and has nearly $80,000 in contributions, with some individuals giving hundreds. Organizations like the Suffolk County Softball Coaches Association and other school groups have hosted fundraisers, and dozens of supporters in matching blue "Laney's Army" T-shirts turned out for her homecoming on Thursday. 

"The support from the local communities is unbelievable. We can't say enough about how generous they've been," McGowan said.

Rare form of epilepsy

Both of Laney's parents told Newsday they hoped to raise awareness about Dravet Syndrome, which impacts about 1 in 15,700 individuals in the United States, according to some studies. 

“It’s a relatively rare epilepsy, most commonly resulting from mutations or abnormalities in a specific gene,” said Dr. Orrin Devinsky, director of NYU Langone Health’s Comprehensive Epilepsy Center.

The genetic mutation impacts an important protein that can make children prone to seizures and developmental delays, and puts them at a higher risk for sudden death in childhood, often due to prolonged seizures, according to Devinsky.

“It’s really essential to get an accurate diagnosis,” he said. “A lot of the most commonly used seizure drugs will make the disorder worse.”

Raising awareness can help doctors or parents recognize the syndrome early on and treat children with the appropriate therapies, he said. Also, a diagnosis can help families access more services and “very specific and very effective therapies.”

“There are now gene therapy trials in Dravet Syndrome to not just control the seizures, but hopefully, really try to reverse the underlying problem,” Devinsky said. He is working on clinical trials testing the therapy, which has not yet been approved for use.

“In most cases, we don’t think of it as a curable syndrome. The vast majority of people with Dravet Syndrome, they won’t be able to get full control of their seizures. Whereas with other types of epilepsy, our goal is for people to have zero seizures,” said  Dr. Benjamin Blond, director of epilepsy surgery at Stony Brook Medicine.

Limiting more seizures

Treatment goals are focused on maximizing quality of life and limiting more severe seizures, he said. There are various anti seizure medications and therapy options available for use, some of which have been approved in the past few years.

Blond said he had read studies that indicate Dravet Syndrome may occur at rates between one in 20,000 and one in 40,000.

Laney was diagnosed at just 4 months old, her parents said, and nurses stay with her several nights a week to monitor her sleep. 

The girl's homecoming on Thursday was announced with sirens from a police escort, cheers from a street lined with well-wishers holding posters and balloons, and the “Hot Dog Dance” from the children’s show “Mickey Mouse Clubhouse” — Laney’s favorite song. 

It was an emotional moment for dozens who surrounded the car as an older sister pulled Laney from her car seat. Some held up phones to take video and share Laney’s return with others via Facetime. The crowd was overwhelming for the 6-year-old, but it didn’t discourage her for long. 

Laney played on the front lawn with her cousins as well-wishers dispersed, which is where, her mother said, she should have been all along.

By Brianne Ledda

brianne.ledda@newsday.com

Brianne Ledda covers the Town of Islip for Newsday. She previously covered Southold and Greenport for The Suffolk Times and is a graduate of Stony Brook University.