Who We Play For saving lives through athlete heart screenings – Tallahassee.com

One day, Cocoa Beach High soccer forward Rafe Maccarone was scoring a game-winning goal against nearby rival Titusville High.

The next day Friday, Nov. 30, 2007 the 15-year-old collapsed during a casual two-lap jog around the practice field.

Cocoa Beach soccer player Rafe Maccarone, 15, collapsed during a practice in 2007 and died the next day from a genetic heart condition. Many of his teammates later founded non-profit Who We Play For while students at FSU in an effort to screen student-athletes hearts while in youth sports. (Photo: Submitted photo/Florida Today)

He died later the next day, one week shy of his 16th birthday.

For Evan Ernst, a 2014 Florida State grad who was a senior on the Minutemens team at the time, it was a startling scene. His younger brother, Zack, was best friends with Maccarone.

That week and the weeks after have forever shaped Ernsts life.

We lost a couple state championships, we traveled the country and we had one of the best teams in the state, if not the country, said Ernst, 25. Its unexplainable, to be a 15-, 16-year-old kid and to be among your best friends and watch a kid just collapse and die in front of you. Its something pretty shocking.

But theres nothing more shocking than learning it was a detectable heart condition, it was preventable, and it represented thousands of people.

Maccarone never had a symptom. Doctors believe he had hypertrophic cardiomyopathy.

It took two years before everyone learned that HCM, a genetic condition which thickens heart muscle and blocks normal blood flow was preventable.

Both Merritt Island and Cocoa Beachs soccer teams wore Rafe Maccarone's number along with the words "Brevard's Finest" on their jerseys during Merritt Island's match at Cocoa Beach on Dec. 13, 2007. Maccarone collapsed at soccer practice and died on Dec. 1. (Photo: Amanda Stratford/Florida Today)

That moment, like Maccarones death, hit Ernst hard.

Bringing together all his best friends in Room 114 of their Phi Kappa Tau fraternity house at FSU, Ernst and 10 other kids hed known his whole life tossed around an idea.

We asked the crazy question Can we create a national movement to protect the hearts of student-athletes? Ernst said. And weve been working every single day for about five years to be able to do that.

Ernst, former Cocoa teammate Zane Schultz and his friends initially took up a fundraising cause, creating the Play for Rafe Foundation.

I knew pretty much exactly what I wanted to do, said Ernst, who majored in entrepreneurship, business management and marketing. I took classes that taught me how.

Who We Play For voluteered its time at Godby High School in December 2016 to provide heart screenings for student-athletes. From left: Christi Gao, Andre Walsh, Angela Byrne, Carmen Araujo, Kathryn Kaspar, Samantha Sexton, Evan Ernst, Quinn Rainer and Anthony Haddad. (Photo: Brian Miller/Democrat)

From the effort, they were able to provide automated external defibrillators for Cocoa Beach High and a Brevard County park to have onsite.

Out of that first incarnation, however, came the desire to do more than treat a condition as it occurred.

Who We Play For was born.

We realized that we talked everyday about Rafe and what he represents, Ernst said. And thats who we play for. Theres thousands of kids like him from Godby to FAMU to FSU that have lost their lives from detectable heart conditions.

Added Ernst: We were young, creative and felt undeterred. Because if we asked that question now, wed probably say its not possible. But we believed it, we were all in, and we committed to it.

And now weve built the biggest non-profit heart screening in the country, and it all started in that room.

The summer after that first meeting was spent in development. Three programs arose AEDs, CPR and heart screenings.

People were already making millions off AEDs; Ernst saw that need as checked off. CPR was also being taught everywhere by the American Heart Association.

But prevention was lacking. Ernst viewed it as the key.

In Rafes case and in most peoples case, if you had an AED or CPR on the spot, you only have a 38 percent chance of saving that persons life, Ernst said. Thats better than nothing, but on the flip side, if we deliver whats asked in the fine print on the physical form for high school or middle school athletes, then theres a 90 percent chance youre going to catch that condition before its even a problem.

Evan Ernst, an assistant soccer coach at Leon High School, works with the team on Thursday, Dec. 1, 2016. Nine years ago, a teammate of Ernst died of a heart condition that if detected could have saved his life. Now, Ernst works to screen students for heart conditions in hopes of preventing the next generation from falling to the same fate. (Photo: Joe Rondone/Democrat)

Calling every single heart-screening group in the country, he asked how they do what they do. He tried to position Who We Play For to be more than just another well-intentioned nonprofit.

Florida State student-athletes and many at NCAA athletic programs get their hearts checked, as do pro athletes.

But for middle school and high school athletes, required physicals required dont go far enough in prevention. Much of that revolved around the cost for an electrocardiogram, which at the hospital would cost $150.

It can literally reduce sudden cardiac arrest in athletes by 94 percent, said Ernst, who found a group in Texas called Cypress ECG Project, which provided him a cost-efficient model.

The biggest cost associated was getting a pediatric cardiologist to read the screenings. By building a volunteer doctor network and using telemedicine, Who We Play For was able to drop the cost considerably.

Then Ernst and his group experimented with taking the heart screenings to schools during the school day.

We give every kid the opportunity to check their heart, whether they can afford the $15 or not, Ernst said. It has to be affordable. If this is ever to become standard, it has to be proven that we delivered dirt cheap.

Who We Play For has now screened middle and high school athletes in six states and over 300 schools. During this 2016-17 school year, it has screened 12,174 hearts. The overall total is now at 86,088 hearts.

Lives saved to date: 66.

Finding one heart condition, its as unexplainable as losing Rafe. There are no words, Ernst said. Its hard to believe every time.

On Jan. 14, 2014 just one week before Who We Play For provided its first Tallahassee screening Godby High School freshman Tariq Barfield was warming up for a track and field practice.

Suddenly, Barfield was dehydrated and woozy. Athletic trainer Jackie Burkette was on hand next to Cougars head coach Jesse Forbes.

Tariq Barfield, a freshman, was warming up for track practice at Godby High School when he collapsed suddenly and later died on Jan. 14, 2014. Barfield was determined to have a genetic heart condition that might have been detected with a simple five-minute heart screening. (Photo: Courtesy of the Barfield family/Democrat files)

The 14-year-old became more and more unresponsive. Burkette looked Barfield in the eye and asked if hed like her to call 9-1-1. He said yes.

An ambulance arrived and the EMS responders took him into its bay, sitting in the parking lot alongside the track before suddenly pulling out, lights on and siren blaring.

Barfield died that day.

The Leon County Medical Examiners Office gave the official cause of death: Sudden cardiac death with abridged left anterior descending coronary artery.

It was a detectable heart condition.

That was the worst day of my professional career, Burkette said. The worst thing that can happen as an athletic trainer is losing a kid like that. We didnt even find out until a couple days later that it was a congenital heart defect and theres nothing you can do for a situation like that.

When Ernst and Who We Play For did their first screening the week after the death, Barfields mother was there. They walked and talked and comforted each other.

That day, no Godby athletes came to the screening. It hurt Ernst deeply.

Godby athletic director Jackie Burkette was previously the schools athletic trainer. On Jan. 14, 2014, she witnessed the death of freshman student Tariq Barfield, who suffered cardiac arrest during a track workout. (Photo: Brian Miller/Democrat)

We realized Saturday screenings are great, but theyre catered around parents that have the resources to get their kids there, said Ernst, an assistant coach for Leon Highs boys soccer team. Its still an issue at hand that socio-economic status determines whether you get your heart checked or not. And thats a problem.

Thats when he decided to take the ECGs directly to schools.

In 2015, Burkette worked with athletic director Joy Becker to provide the first heart screening for Godby student-athletes.

Burkette, now the schools athletic director, had 70 athletes screened in December. They paid nothing thanks to Who We Play Fors search for grants and donations.

She keeps a picture of Barfield on the wall above her computer. It serves as a daily motivation to ensure her student-athletes are safe and protected. A simple heart screening could have saved Barfields life.

But at a Title-I school like Godby where 70 percent of students live below the poverty line, day-to-day survival often takes priority.

To have something like Who We Play For, which goes out on its own time to get grants to pay for my kids, its invaluable, Burkette said. Were able to test them for something they might not have had the opportunity to get before.

Andre Walsh was an energetic kid, running around St. Catherine, Jamaica, without a care in the world. By high school, Walsh had developed into one of his countrys top sprinters and hurdlers. He later competed for two years in the U.S. at the University of Maryland-Eastern Shore.

He transferred to FSU in 2013. That triggered an automatic heart screening.

Walsh was diagnosed with acute viral respiratory disease. He underwent surgery for an implantable cardiac defibrillator. His doctor prescribed beta-blockers to keep his heart rate down. But there was a bigger blow.

Andre Walsh runs an ECG machine at Godby High School as part of screenings with non-profit Who We Play For. Walsh, who transferred in 2013 to FSU as top track runner, was diagnosed with a heart condition that ended his running career. (Photo: Brian Miller/Democrat)

Not yet 25, Walsh was forced into retirement. He could never race again.

Its scary to know that something could have happened during that whole time, but thankfully nothing did, said Walsh, now 27. Coming out of the blue, thinking about FSU and a possible career in track to having all that stripped away, it was hard.

Walshs depression lasted two years as he struggled to adjust to losing his livelihood. Without the structure of class and practice, he became less productive in school and in life. Eventually, he sought the help of a counselor to deal with the psychological effects

Given a chance at a normal life, Walsh started volunteering with Who We Play For. Slowly, he realized that having his dreams snatched away was not the worst thing in the world.

I was distraught and shocked, but then I realized the chance I got, said Walsh, who still cannot exercise or risk elevating his heart rate to dangerous levels. Speaking to Evan, I realized what was really going on and could see there were a lot of people who didnt survive it. That helped me a lot, to go out and speak to others about what would happen.

As one of many who have volunteered with Who We Play For, he was able to visit the Parent Heart Watch conference.

He saw parents who had lost their child to detectable heart conditions. His own parents could have easily been among them.

I saw and felt the immense pain, Walsh said. For Evan and Who We Play For putting in this initiative, it helps a lot to know we can catch this so that a tragic thing doesnt happen to another family.

Walsh is a success story.

Other FSU athletes, such as Harry Mulenga (track) and Leyla Erkan (tennis), have had heart conditions discovered by screenings.

There are those who survived through good fortune. Former Chiles High cheerleader Brittany Williams passed yearly physicals only to have her condition discovered at age 24.

Theres no registry, so we have no idea how many kids die from this and we have no idea how many kids been caught.

There are those who have died. Florida A&M student Antwan Ivey in 2014 seven years after rushing for a state-best 2,345 yards and 31 touchdowns during Newberry Highs state championship season.

Concussions, which are widely discussed as a major prep sports area of concern, didnt cause a single death last year. But not much is known about how many die from detectable heart conditions.

Sudden cardiac arrest, however, affects 9,500 youths annually and is the leading cause of death on campuses, according to Parent Heart Watch.

Doctors believe the most vulnerable age is between 15-16, influenced by puberty and strenuous exercise.

Who We Play For co-founder Evan Ernst runs a heart screening for Godby High School student-athletes in December 2016 (Photo: Brian Miller/Democrat)

One controlled-population study of NCAA athletes from a doctor in Washington on Who We Play Fors team determined an African-American Division-I basketball players rate of having a heart condition is 1 in 3,200. In total for NCAA student-athletes, it is 1 in 40,000.

Thats really the biggest question to what we do, Ernst said. Theres no registry, so we have no idea how many kids die from this and we have no idea how many kids been caught.

Ernst has no visions of fame and fortune. He just wants to spread his message of awareness from Cocoa Beach and Tallahassee to the far reaches of the nation.

I cover my bare minimum expenses, but Im definitely not making money, Ernst said. From the start, we wanted to be a non-profit because we never wanted anyone to question our incentives behind this. There will come a time in our lives when we can make money, but wed love to do this first.

Transforming from grassroots effort into global mission, Who We Play For is honoring Maccarones memory and saving lives along the way.

Our goal will be met when every student-athlete has a chance to check their heart, Ernst said. Were done when its not in the fine print, but when it is delivered.

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Who We Play For saving lives through athlete heart screenings - Tallahassee.com