Lynbrook resident, 9, was a heart walk ambassador

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At only 9-years-old, Casey Coco went in front of thousands of Long Islanders and spoke about his heart condition at the American Heart Association’s Long Island Heart Walk at Jones Beach on Sept. 16.

As an ambassador, Casey led the walkers in a stretch, cut the starting line ribbon and waved his red cape. “I liked it a lot because I got to go on stage and cut the starting line with big scissors,” Casey said. “Also, my family and friends all came to the walk and we raced the whole walk.”

He and his parents, Ryan and Keely, also welcomed the Long Islanders to the walk and spoke about Casey’s life with Tetralogy of Fallot, a rare condition caused by four heart defects that are present at birth. His parents also said that Casey epitomizes a heart survivor by being “tough, passionate, determined and full of life.”

Ryan and Keely learned that Casey had a congenital heart defect when Keely was 20 weeks pregnant with him and his twin brother Cameron and were informed that Casey would need surgery. “We were prepped extensively on what to expect regarding Casey’s immediate open-heart surgery,” Keely said, “but nothing could ever prepare us for the emotional roller coaster we endured.”

She went into labor seven weeks early and the twins were born prematurely. Casey weighed only 3 pounds, 9 ounces, and was determined to be too small for open-heart surgery. Weeks later, he gained enough weight and the first surgery was conducted successfully. When he was 9 months, Casey underwent another successful surgery, during which a conduit was placed in his heart to help it function correctly and enable him to grow. The conduit will need to be replaced with more surgeries until he is fully grown. The family is unsure how many procedures he will need in his lifetime.

Casey now has a scar on his chest from the surgeries and has faced a lot of adversity, but his parents described him as “happy, athletic, smart, kind and loving,” and said that his health issues have not defined who he is.

“Although the six-month cardiology and yearly stress tests remind us what he has been through and the obstacles to come, life is normal as it gets in the Coco household,” Ryan said. “With school, homework, multiple sporting activities and family events, we are happy, busy and overall blessed.”

The walk raised more than $500,000 for research into heart disease.