Casey Coco has undergone three open-heart surgeries and multiple invasive procedures in his nine years of life to combat a congenital heart defect known as Tetralogy of Fallot, which is a rare condition caused by a combination of four heart defects that are present at birth.
In honor of his bravery and all he has overcome, Casey will serve as the “Red Cape” ambassador at the American Heart Association’s Long Island Heart Walk at Jones Beach on Sept. 16.
“I wanted to tell others about my story,” Casey said about accepting the honor. “I also got to miss school to present my story to the American Heart Association.” Casey entered fourth grade at Marion Street Elementary School this year.
The walk, which will take place at Field 5, celebrates survivors. Some walkers will don a red baseball cap featuring the American Heart Association logo, which represents those who survived a heart attack, cardiac arrest or heart surgery. White caps will be distributed to stroke survivors during the walk, while pediatric cardiovascular disease survivors will receive red super hero capes to acknowledge their courage.
Casey’s parents Keely and Ryan Coco learned that he 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.”
Keely 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 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 Cocos said they didn’t tell Casey about his condition until he was asked to be the Red Cape ambassador because they didn’t want it to define who he is. They said after the American Heart Association approached them about Casey’s role, they felt it was the perfect time to tell him and he enthusiastically agreed to be the ambassador.
Casey said he remembers visiting doctors frequently at a young age, but noted that he doesn’t remember many of the surgeries. He said the condition hasn’t stopped him from having fun, and that he enjoys playing baseball, basketball and soccer. He added that he is most looking forward to seeing the about 75 friends and family members who are coming to the walk to support him. “It’s going to be cool because I get lead the heart walk and tell others about my story,” he said.
His role as ambassador is to help create awareness about the importance of survivors participating in the event and to illustrate that stroke and heart disease don’t just affect older people. According to a release, the American Heart Association estimates that there are more than 71 million Americans alive with one or more types of cardiovascular disease. Thousands of survivors and their friends and family members are expected to follow Casey’s lead at the walk.
“Casey is excited and happy to represent all the heart heroes on Long Island at the American Heart Association Walk,” Keely said. “Casey will never be only defined as a heart hero, but his triumphs and tribulations will be part of his story.”