March 4, 2022
A U.S. bill winding its way through Congress named for Cocoa Beach high school student Rafe Maccarone, who died from an undiagnosed heart condition at age 15, could help prevent deaths like his around the country.
The Access to AEDs Act in Memory of Rafe Maccarone, sponsored by U.S. Rep. Al Lawson and U.S. Rep. Bill Posey, would fund grants for elementary and secondary schools to develop programs promoting automated external defibrillation (AED) and Cardiopulmonary Resuscitation (CPR) in schools.
“Often families learn far too late that their loved ones were living with a heart condition,” Lawson said in a press release. “Sudden cardiac arrest does not discriminate against age or athletes, and it is my intent to bring preventive measures to our schools and promote a public awareness about this unfortunate cause of death.”
Maccarone was a sophomore at Cocoa Beach Jr./Sr. High School when he went into cardiac arrest as he was warming up for soccer practice. He died the next day.
Maccarone had undiagnosed hypertrophic cardiomyopathy, a disease in which the heart muscle is thickened, making it more difficult to pump blood. Many young people show no symptoms until they suddenly go into cardiac arrest.
The bill is in the House Energy and Commerce and Education and Labor committees and has support from both Democrat and Republican lawmakers.
Shawn Sima, member of the board of directors of Who We Play For, an organization with a mission to eliminate sudden cardiac deaths in young people, knows firsthand the impact these events can have on families. His daughter, Lexi, went into sudden cardiac arrest in 2016 when she was 16 years old.
His daughter, Lexi, collapsed while running on a treadmill at a gym and went into cardiac arrest. She survived after people at the gym performed CPR on her and used an AED.
The deaths often strike young, apparently healthy students during gym class or sports.
“She was five-foot-nine and softball player, basketball player, cheerleader,” Sima said. “You know, the picture of health, like most of these kids. me and my wife we believe in God, we held hands. We laid on top of our daughter and we prayed like hell, but please let our daughter live. And if he did, we would pay it forward and he answered, and so we’ve made it our mission in life to pay it forward.”
A second bill in the Florida Senate filed by Senator Dennis Baxley (R-Ocala) would require heart screenings or electrocardiograms (EKGs) for kids before they play sports. The bill has not passed the education or health committees, and Florida’s legislative session ends March 11.
A heart screening likely could have caught Maccarone’s condition and prevented his death, Sima said. Regular physical exams often miss heart conditions that would appear on an EKG.
“On average, one in 300 kids has a possible deadly heart condition,” Sima, a physician’s assistant, said. “And you can’t hear electricity going through a wall with a stethoscope, and you can’t hear it when you put it on a kid’s chest. … But these electrical conditions that kill our kids 20 times a day, at least in the United States. We as medical professionals miss them.”
Sima said a heart screening likely saved the life of a young man who had been screened through Who We Play For three years ago as a Titusville High School athlete. This summer, he was working as a landscaper and collapsed; because his friends knew that he had a heart condition, they were able to perform CPR and immediately call for an ambulance instead of waiting to get help.
“The most likely killer when we drop our kids off is not guns,” Sima said. “It’s not falls. It’s not choking. A sudden cardiac arrest is the number one killer of athletes, and it’s the number one killer on school campuses.”