Kansas City boy drops puck for Barth syndrome awareness

New York, NY – The New York Islanders and New York Rangers weren’t the only superstars on the ice earlier this month.

Fourteen-year-old Bly Brody, a superstar in his own right, dropped the ceremonial puck as the Islanders hosted their third annual Barth Syndrome Awareness Day.

Bly, a Kansas City, MO resident, was born with Barth syndrome, a rare genetic condition that worldwide affects only about 300 people, primarily boys. Barth syndrome is characterized by an enlarged and weakened heart, muscle weakness, recurrent infections, and small stature, and frequently results in fatal infection or heart failure by age 3.

But Bly, who was diagnosed at 23 months old, is beating the odds and continues to offer hope to others affected by the devastating disorder.

“He is our superstar,” said DW Brody, Bly’s dad. “He amazes us every day with his positive attitude and can-do spirit.”

The Islanders’ Barth Syndrome Awareness Days allow hockey fans to learn about the condition and find out how they can help. In addition to dropping the ceremonial puck, Bly was also featured in a video shown on the scoreboard during the game.

“While Bly can’t play hockey due to his Barth syndrome, he loves to watch the game,” said DW. “Bly will remember this game for a lifetime.”

BSF volunteers were on hand to raise awareness and collect donations on the Barclay Center concourse. The Islanders’ Barth Syndrome Awareness Days are made possible by Islanders’ owner Jon Ledecky in partnership with the Barth Syndrome Foundation (BSF), the only worldwide organization dedicated to finding a cure for Barth syndrome.

To learn more, please visit www.BarthSyndrome.org.