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Community supports Sayville girl fighting for her life against rare disease

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The young daughter of two local high school coaches is receiving a wave of support from Long Island communities as she endures a lengthy hospital stay in her battle against Dravet Syndrome.

Heartfelt pleas for prayers have been posted across Facebook and Instagram for 6-year-old Laney McGowan of Sayville, who is on life support with her parents, Tiffany and Jason, by her side. A GoFundMe effort started on Tuesday, Dec. 27, has raised more than $33,000 in support of the family.

“Laney struggles daily with terrible seizures and is now literally fighting for her life!” explained Jennifer Wittman-Cahill, who organized the GoFundMe page, Laney McGowan’s Fight. “She is currently on an Ecmo machine and ventilator so that her lungs and heart have time to recover.”

Laney, who is one of six siblings, has struggled for years with Dravet Syndrome, a rare, severe epilepsy syndrome that starts in early childhood. She had open heart surgery when she was 3 years old.

Wittman-Cahill noted that Laney’s parents are by her side at Cohen Children’s Medical Center in New Hyde Park and will lose time from work and may need to take an unpaid medical leave to be with their daughter.

An update of Laney’s condition posted by her mother on Tuesday indicated that while Laney remained on life support, her heart function was improving.

“Like many of you know she’s sassy and a fighter and she’s continuing fight💪💪🙏🙏💜💜🦋🦋❤️❤️,” Tiffany Rowan McGowan posted about her young daughter. “From the bottom of our hearts we truly want to thank everyone for all of the love and support you are showing us through this difficult time!!”

“The prayers are working and Laney still needs them!! Please keep them coming,” added Rowan McGowan, a health coach in Sayville schools and the head coach of the varsity softball team.

Laney’s dad Jason, a Bellport High School graduate, is a special education teacher with Amityville schools. He coaches the East Islip varsity softball team.

“Our Laney girl is the toughest, strongest and bravest person we know!!” Rowan McGowan, a Sayville High School alumna, said in her Facebook post.

Top photo: Laney McGowan. GoFundMe