Long Island school raises $1,000 in celebration of student with Moebius Syndrome

Stacey Sager Image
Friday, January 24, 2020
EMBED <>More Videos

Stacey Sager reports on a Long Island school which raised money in support of a student with a rare disorder.

DIX HILLS, Long Island (WABC) -- A school community in Long Island raised nearly $1,000 to celebrate a kindergartner who suffers from a rare disorder.

Faculty, students and families of the Half Hallow Hills Central School District came together on Friday, decked out in all purple to celebrate Addison Garvey, who has Moebius Syndrome.

The neurological disorder causes facial paralysis, and Addie, as she is known, needs 24-hour care and can't swallow or eat solid foods.

One of the toughest parts for the 5-year-old is that she can't smile, but that doesn't stop her from expressing joy with her body.

"All of her gestures, you can just know what she's saying," Addie's mother Jennifer Garvey said. "Her eyes kind of tell a story."

Addie had facial surgery back in July to give her face a subtle smile. Her mom says it has also given Addie more confidence as she struts around school.

"Such a smart girl, and really educates all of us," teacher Taryn Cuoco said.

Addie's fellow students at Otsego Elementary School in Dix Hills showed their support by transforming the school into a sea of purple for Moebius Syndrome Awareness Day.

Students wore purple and created purple ribbons and sold them for $1, which helped raise nearly $1,000.

Otsego principal, Stacey Gillespie, said that the whole student body is learning life lessons from such a strong girl.

"Lessons about what it's like to persevere through challenges," Gillespie said.

Only one in every half a million people in the world has Moebius Syndrome. Without awareness campaigns like the one Otsego Elementary put together, most people would never recognize the symptoms of the disorder.

For Addie, she's learned sign language and the importance of inner joy.

All the proceeds raised will be donated to the Moebius Syndrome Foundation.


* More Long Island news

* Send us a news tip

* Download the abc7NY app for breaking news alerts

* Follow us on YouTube