Teen born with rare genetic condition to be special guest at NHL - Erie News Now | WICU & WSEE in Erie, PA

Teen born with rare genetic condition to be special guest at NHL game

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Jessica Royce

Burton, Michigan -- A young Genesee County teen born with a rare genetic condition will be a special guest at an upcoming NHL game.

Devin Addington, a 13-year-old boy from Burton, was born with Barth syndrome. The genetic condition affects about 200 people worldwide. The disease causes an enlarged and weakened heart, muscle weakness, recurrent infections, and small stature, and frequently results in fatal infection or heart failure by age three.

Devin underwent a successful heart transplant at 9-weeks-old.

The New York Islanders will host the Detroit Red Wings on Friday, Feb. 9 at their second "Barth Night" hosted by the New York Islanders, where hockey fans will learn about Barth syndrome and how they can help.

Devin will get to ride the Zamboni and drop the ceremonial puck. He'll also be featured in a video shown on the scoreboard during the game.

"Devin absolutely LOVES hockey," said Nicole Derusha-Mackey, Devin's mother. "He can't play due to his Barth syndrome, but he loves to watch and talk about hockey. This game is all he's talked about for weeks."

Devin's family and friends are hosting a watch party at Sharky's Sports Bar in Burton beginning at 6:30 p.m. Tickets are just $10 and include pizza and pop.

Proceeds will go to the Barth Syndrome Foundation.

WNEM

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