By Kim Constantinesco
The life of the dead always continues on in the living.
Look no further than Zane Schultz, 26, the co-founder and heart screening manager of Who We Play For (WWPF), a national non-profit that partners with schools to help identify students at risk for sudden cardiac arrest using electrocardiogram screenings.
Schultz lost high school teammate and good friend, Rafe Maccarone, to sudden cardiac arrest, right there on the soccer field a week before his 16th birthday.
The tragedy spurred Schultz and a group of friends to start WWPF, which has screened over 70,000 students and athletes in six different states.
“Sixty-three kids have been flagged as “high-risk” and needed immediate intervention,” Schultz said.
That’s 63 young lives potentially saved thanks to the efforts of WWPF, which was built on the lives of many kids whose time was cut too short.
Doing It For Rafe
Maccarone was the “popular quiet kid” at Cocoa Beach High School. He put out a podcast the week before he died in 2007 declaring that his dream was to play for the U.S. National Team. He lived in a tight-knit community, where if tragedy was going to strike, family and friends would be able to carry on memories and then some.
On a late November Friday afternoon, Maccarone, Schultz and the rest of the Cocoa Beach High soccer team took to the practice field. They started with an easy two-lap warm up.
Uncharacteristically, Maccarone was bringing up the rear. As soon as the group crossed the finish line, Maccarone collapsed. He wasn’t breathing. Schultz’s dad, who was the JV coach at the time, and teammate, Nino Holmes, performed CPR before first responders took him to a local hospital and then flew him to Arnold Palmer Hospital in Orlando.
He was a multi-sport athlete, who excelled in everything from flag football to downhill skiing. He was the picture of health, passing every single sports physical that he ever went through.
“No one ever thought something like this would happen to Rafe,” Schultz said.
A day after collapsing on the pitch, Maccarone died, and the small beach town community was devastated.
“One of the bigger reasons why we do what we do with Who We Play For is the first symptom, for a lot of kids that pass away from sudden cardiac arrest, is the cardiac arrest,” Schultz said.
The Cocoa Beach High School soccer team was given the option to forgo the rest of the season. They said, “Absoultely not.” Then, they went further than any other Cocoa Beach boy’s soccer team had been before making it to the regional semi-finals.
“We were successful that season because we were playing for something greater than ourselves,” Schultz said. “That was the concept for Who We Play For.”
Prevention Over Primary Care
After the soccer season, Schultz and his group of friends wanted to do more. So, they formed Play for Rafe, and started hosting 5K’s and other fundraisers with proceeds going toward a scholarship in Maccarone’s name.
Then, as most of them entered Florida State, they had the idea to place AED’s (automatic external defibrillators) in public areas.
“As far as we knew, we thought AED’s were the solution,” Schultz said. “We thought if the school had an AED that the public could access, then maybe Rafe would be with us today.”
At about $1,500 a pop, the group was able to place seven AED’s, but they wanted to make a bigger dent in the illness.
“What we learned late in college is that screenings and early detection, or EKG’s, were ultimately the most effective way to prevent sudden cardiac arrest,” Schultz said. “So, we got busy addressing the root of the problem and not the symptom.”
Play for Rafe transformed into Who We Play For, which developed their preventative care plan: They would deliver EKG’s to schools during sports physicals and help establish follow-up care for those who are flagged.
“Initially, we went to a Parent Heart Watch conference, and our goal was to walk away with a group that was going to help us perform EKG heart screening in schools,” Schultz said.
In the final hours of the conference, Who We Play For’s core of Schultz, Evan Ernst, and Kieran Easton linked up with Living4Burke, a foundation in Louisiana named after Burke Cobb, a lacrosse player who had undetected hypertrophic cardiomyopathy, and passed away just before entering ninth grade. Living4Burke connected Who We Play For with the Cypress ECG Project, a group out of Texas that would come to help them deliver EKG machines to schools.
Their first screening in 2014 was a huge success to the tune of 175 kids who had EKG’s. They did many more screenings, and eventually took their wireless EKG machine to Panama, where in order for a lot of central Americans to get a doctor’s appointment, qualify for an EKG, and get a consultation from a cardiologist, it can take 12-18 months. Not to mention, it can cost a quarter of more of their income. WWPF went during the summer of 2015 and ran EKG’s, which took all of five minutes per person, and detected five people who had the same heart condition as Maccarone. Those marked as high risk were taken to the hospital immediately for treatment.
A Test Not Aced
Heart screenings should be a part of every student athlete’s physical, but it’s not that way yet. Thankfully, for Florida State tennis player Leyla Erkan, her school offered them.
Erkan, now 22, had abnormal results on her EKG just before her freshman year, so they sent her for an echocardiogram.
“When they looked at it, they thought it was something ‘normal’ that can happen to athletes because they’re so fit, so I was cleared to play,” Erkan said.
Before her sophomore year, the EKG again revealed an abnormality. Because she wasn’t exhibiting symptoms, and again, her echocardiogram looked okay, she was cleared to play. Then came the warning signs.
“Three months later, I started having symptoms like dizziness, tunnel vision, and no muscle strength,” Erkan said. “I went back to the cardiologist so he could give me a stress test, and that’s when he told me that he wasn’t comfortable clearing me for the season.”
Eventually, Erkan was diagnosed with ARVD (Arrhythmogenic Right Ventricular Dysplasia). She had a couple of procedures including the implantation of an automated defibrillator two years ago.
She also had to give up something that we hear makes the heart stronger — exercise, which obviously included tennis.
“ARVD is very aggressive with exercise. Any type of physical exertion that will get heart rate up will scar my heart, and will cause enlargement on the right side,” Erkan said.
So, she gave up the sport that she had played competitively since she was 11.
“I identified as being a tennis player and so when people saw me, that’s usually what they would ask about first,” Erkan said. “To lose that, it felt like I lost everything about me. Working through it was the hardest part.”
Erkan went on to write for her school’s newspaper, and she got into radio before earning her degree in creative writing and communications last August.
Though the screening changed the course of her life, she’s glad she had it because in the end, it saved her life.
Running Into A Diagnosis
Andre Walsh, 26, is another former Florida State athlete, who was flagged during the screening process.
Walsh grew up running around Saint Catherine, Jamaica. Since age 9, running was life, and he developed into one of the best sprinters on the island.
He was part of the first high school team to ever break 40 seconds in the 4×100; a team that was also comprised of Olympians and World Champions Yohan Blake, Nickel Ashmeade, Riker Hylton.
Walsh earned a scholarship to the University of Maryland Eastern Shore and became a two-time all-American before transferring to FSU in the fall of 2013.
The 400-meter hurdler and 200-meter sprinter never had a heart screening prior to arriving at FSU. As soon as he got to the school, however, he was diagnosed with ARVD. Just like Erkan, he had no health problems prior to his diagnosis.
After wearing a heart monitor for a month, doctors put him on beta-blockers and told him to hang up his spikes.
“The ‘side effects’ from not running hit me hard,” Walsh said. “I was not functioning well in school due to the effects from my medication and not having running in my life. I had to go see a psychologist to deal with treatment for the mental side of things. We explored anti-depressants because I was displaying symptoms of depression and anxiety. I registered with the student disabilities resource center, and they recommended that I have more time on tests..”
To fill the void, the media and communications major eventually started helping out with the track team in the recruitment department. He also began volunteering for WWPF.
“Every young athlete should be screened for heart conditions,” Walsh said. “Screenings help catch things that cause your parents and your other loved ones so much heartache.”
No Reason Not To Get Screened
Although Erkan and Walsh had to give up their respective sports, most athletes who are flagged as high-risk don’t have to quit.
“Of those 63 kids that we’ve screened as high-risk, only 8 of them have not been able to return to the field of play,” Schultz said. “There’s a very good chance that a change of lifestyle will be very minimal.”
In addition to the 63 high-risk cases, a couple hundred kids have been told that they have indications of potential heart disease, meaning it’s not putting them as risk for sudden cardiac arrest now, but it’s something that could evolve into a problem.
Today, WWPF is a conglomerate of people all with a similar goal in mind: To stop the silent killer that isn’t talked about enough.
So, for WWPF and people like Erkan and Walsh, the beat goes on. All so others’ hearts will beat on.