In November 2010, Floral Park resident Marilyn Bird’s brother, William, then 12 years old, was diagnosed with an enlarged aortic root (an aneurism in his aorta) during a free cardiac screening for athletes at St. Francis Hospital, which was being conducted by pediatric cardiologist Dr. Sean Levcheck in the Cold Spring Harbor school district.
“Dr. Levcheck told us my brother was one of a few students who were diagnosed with a rare pediatric heart condition that day,” said Bird. “Despite this being something both my brother and family did not expect or want to hear, this diagnosis saved his life.”
Bird said that before the screening, William was actively playing five sports. The diagnosis halted his sporting activities.
As his treatments progressed, the specialists were treating William as a patient with a Marfan heart. Marfan Syndrome is a rare genetic disorder that can cause aortic enlargements.
In October 2012, when Bird was a senior at Floral Park Memorial High School, she organized the first Heart For Fashion, featuring prom wear, to raise awareness for Marfan Syndrome and benefit the Pediatric Heart Center at Cohen Children’s Medical Center. She consulted with her good friend, and Girl Scout sister, Rachel Trifon. Since Bird and Trifon recently completed their Girl Scout Gold Awards, the duo knew pulling off a fashion show could be accomplished.
They contacted Dr. Kathleen Sottile, the school principal.
“Dr. Sottile was completely on board, loved our idea and told us we just needed two clubs to sponsor us,” said Bird. “Rachel and I contacted The National Honor Society and Key Club; they both agreed to sponsor us and Rachel and I were on our way to a fundraiser.”
Trifon’s dining room became their headquarters.
“We needed tables, chairs, linens, dresses, tuxedos, raffle baskets and more and before we knew it donations were pouring in and we found ourselves planning something that was going to be amazing,” added Bird. They had more than 60 student and faculty models join their cause, and drew more than 550 people, raising $8,000.
Last year, after attending an annual Marfan Family Conference in Baltimore, Bird said her brother shared his experience with a long-time mentor and teacher at Floral Park Memorial High School, Dustin Demmers. His own son, Ethan, was recently diagnosed with Duchenne Muscular Dystrophy in 2013 and was in the process of genetic testing. William shared contacts and information about the conference in Baltimore, and that some of the specialists he had met also specialized in Duchenne Muscular Dystrophy.
The Bird family credits Demmers for being a great role-model for their son throughout the years of his treatments and doctors’ appointments. Demmers was also a participant in the first fashion show. The Heart For Fashion 2 (H4F2) event, which is being co-produced by the Class of 2015, will benefit the Pediatric Heart Center at Cohen Children’s Medical Center and Ethan Demmers.
Bird, now a junior at Adelphi University in Garden City, told the Floral Park Dispatch, since William is now a senior at Floral Park Memorial, the H4F2 also serves as an event to bring the senior class together before many of the students part ways and some head off to college.
This year Floral Park Memorial High School is hosting its fashion show H4F2 to raise awareness of genetic disorders on Thursday, March 12, at 7:30 p.m. in the high school gymnasium at 210 Locust Ave. in Floral Park. More than 120 models will participate in the fashion show, with a fundraising goal of more than $15,000.
“Joe Miller, at Genesis Events of Floral Park, was the first local business to commit to helping Heart For Fashion 2 and has come through for us this year, donating an LED runway, draping, DJ and emcee services,” said Bird. “Dozens of donors and sponsors are showing their support for us again this year.”
Tickets for H4F2 are $10 for adults and $6 for students and must be purchased in advance of the event. Early ticket purchase is encouraged this year due to the high-demand and limited seating. Donations and raffle items are still being accepted. Contact Marilyn Bird at Heartforfashion2@gmail.com or at 516-406-1315.
