COCOA BEACH, Fla. -- Nine years ago, Cristina Cinca and Zane Schultz had no clue that their lives were setting them on course toward a common cause.
Cristina, 15, was diagnosed in 2007 with restrictive cardiomyopathy – heart disease with thickening and stiffening of the heart muscle. Months later, Schultz’s friend Rafe Maccarone died from sudden cardiac arrest after collapsing on the soccer field during practice. Now, they both pour their energy into preventing sudden cardiac death in youngsters.
“I had a heart transplant when I was 13, and it was quite the journey,” Cristina, now 15, told FLORIDA TODAY. “I am putting on a walk to celebrate my second year for my transplant, and I decided to donate the funds.”
Yep, you guessed it -- the money Cristina pulls in at the walk will go to Who We Play For, the nonprofit founded in memory of Rafe by Schultz and other friends. The group was started in Brevard after Rafe’s death to provide education and athlete heart screenings. Last year, the nonprofit conducted just under 19,000 screenings across seven states, said Schultz, 25.
Cristina and Schultz (alongside his team) were at Cocoa Beach Jr./Sr. High last week, where the WWPF was conducting a second round of free heart screenings for students in fall athletic programs.
“I really connected to the story they had,” said Cristina, who didn’t personally know Rafe.
Last year, on the first anniversary of Cristina’s transplant, about 150 people walked the beach. About $10,000 was raised, which Cristina donated to The Children's Cardiomyopathy Foundation. This year, she’s all about WWPF.
“That was around the same time, and we had no idea that that was passively happening,” Schultz said. “Her story was happening (parallel) to Rafe’s, and they were impacted the same way we were.”
Participants can register for Sunday's walk at crowdrise.com/teamnina — or just show up. A $15 donation per person is suggested, to fund the cost of heart screenings for kids who can’t afford them.
Cristina Cinca was born five weeks prematurely with a small hole in her heart. It was a condition that didn’t require immediate attention – just something to watch.
At a routine visit six years later, the pediatrician detected a murmur and urged a follow up with a cardiologist. Cristina was diagnosed with restrictive cardiomyopathy.
“It was devastating,” mom Heather Cinca said, recounting the horrible statistics she stumbled upon. (According to the Children's Cardiomyopathy Foundation, kids "with restrictive cardiomyopathy have a 44-50% chance for 2 year survival" after being diagnosed.)
Cristina’s condition is often dubbed “The Mickey Mouse heart disease,” due to the diseased heart’s enlarged appearance, her mom said. The Cincas traveled the country for second, third, fourth and fifth opinions.
“You have feelings of desperation,” Heather said. “How do I explain to my 6-year-old that she may not survive another 3 years? It’s heart wrenching.”
For Heather, it was important to try to maintain normalcy for their family, which includes husband, George, and son, Parker, 10. They sought treatment at Shands Hospital at the University of Florida-Gainesville, managing Cristina’s condition as long as possible with medication. They kept the grimmest of details from their daughter's young ears – which was fine with her.
“I would go out of the room,” Cristina admitted of the doctor visits. "I was afraid I was going to be freaked out.”
She managed, but it was difficult being worn out from the simplest of tasks. Cristina slept a lot, was winded by simply walking and did much of her schooling remotely.
“I couldn’t do anything my friends were doing,” said Cristina. “At PE, I would sit out. I’d watch. Or they’d all have sleepovers, and I wouldn’t sleep over because I’d be just too tired and I’d have to cancel plans all the time.”
In time came the need for a heart transplant. Cristina was on board, especially after one false start (a heart was found for her in July 2014, but she was diagnosed with pneumonia during pre-operative tests and couldn’t have the transplant). The call came on Sept. 24, 2014. As she was wheeled in to surgery to receive the heart of a 22-year-old Mississippi woman, Cristina’s thoughts turned to family and friends.
“I was really scared but really excited, but I was ready,” she said. “I had waited a long time.”
Cristina’s surgery was a success. Now, she can do the things that used to be impossible for her – walking the beach, bike riding, wakeboarding.
Cristina hopes to be a doctor someday. “I definitely want to make a difference in people’s lives, for sure.”
Heather feels incredibly grateful, too. “I feel like we’ve been given a gift,” Cinca said.
Cocoa Beach connection
Enter Who We Play For.
The group, which has a presence in seven states, utilizes Cardea Screen, a handheld electrocardiographic device, to help identify athletes who may be at risk. According to The National Federation of State High School Associations' website, SCA "is the number one cause of death in the United States for student athletes during exercise."
Schultz, the nonprofit's heart screening director, said sudden cardiac arrest in youth are more prevalent than reported. The group worked with the Florida High School Athletic Association to bring change to high school athletics. “Now every player, trainer, coach is being educated on cardiac arrest,” he said.
“The fact that there are preventable deaths, the fact that these are totally detectable heart conditions, the fact that there’s a tool that is cost-effective to address it that’s not being used, that’s just honestly, it’s kind of horrendous,” said Schultz. “We’re in the United States. In Israel and Japan, it’s a standard.”
Schultz explained the screening data is downloaded via Bluetooth and sent to a cardiologist for review, who flags athletes who need further review.
Fran Siljestrom is the athletic director at Cocoa Beach Jr./Sr. High. Her son was diagnosed with his own heart condition months before Rafe died.
“It’s so much more common than we realize, and the awareness is just awesome,” Siljestrom said.
Siljestrom said WWPF was instrumental in creating “this opportunity for schools to have heart screening within the schools…now all our student-athletes are required to have the sudden cardiac arrest training,” she said. “It’s just absolutely amazing.” She was equally impressed with Cristina.
“That’s awesome!” Siljestrom told Cristina about her plans to donate proceeds. "Good girl. That’s really great.”
Cristina, now at Holy Trinity Episcopal Academy, is proud of her journey.
“Finding what we’ve found here is just a beautiful connection," Heather Cinca said.
Paulson is the editor of Space Coast Parent, a free monthly parenting magazine available throughout