By Danny Schrafel
This is one casino visit where you might not mind losing your shirt.
A May 14 casino night fundraiser at the Woodbury Country Club will benefit a Dix Hills family whose newborn daughter was born with a rare neurological disorder.
The event, hosted by the Testaverde Fund for Spinal Cord Injury, will support a trust fund to benefit 4-month-old Addison Garvey’s future medical care and education.
Jen Garvey, a 2006 Hills East grad, and her husband Jim, a mortgage banker and grandson of the late Half Hollow Hills community activist Bea Garvey, said the island-wide outpouring of support for their little girl has been “incredible.”
Addison was diagnosed with Moebius Syndrome, a disorder of cranial nerves six and seven which results in varying degrees of facial paralysis. In Addison’s case, she cannot blink or move her mouth, resulting in difficulties with eating and speaking, Jen said.
Moebius Syndrome affects just two out of every 1 million people. There are no in-utero tests that can detect the syndrome; no determinations on causes and no cure. Addison receives speech, physical and operational therapy to treat the disorder, and a nutritionist oversees the use of a G-tube to feed Addison.
With obstacles on the horizon, Jen said her colleagues in the New Hyde Park-Garden City Park School District, where she teaches first grade, sprung into action. Already, they’ve held a happy hour fundraiser in support of the family and stepped up again, organizing the casino night when they realized baby Addison’s needs were more complex than initially thought.
Her coworkers have also donated sick days, allowing Jen the flexibility to stay home with her newborn without losing a day’s pay.
Friends from all walks of life have stepped up to the plate as well. Her father has called in support from his friends in the Nassau County Detectives Association, and husband Jim’s ties in the banking and real estate industries have proven fruitful as well.
The outpouring of generosity has inspired the couple.
“One of the greatest blessings of our journey… has been experiencing the kindness of extraordinary people,” they said. “We’ve become inspired to be more like them – loving people just for the sake of loving, without receiving anything in return.”
Tickets are $75 per person, which includes $100 in chips. A table of 10 is $700, and includes $1,000 in chips for the group. Call 516-398-8968 for more information.