GREENSBORO, N.C. — On the University of North Carolina Greensboro (UNCG) men's soccer fields is a small but mighty force, one with superhero strength and lifesaving powers.
"One, two, three, team!" he shouts loudly, in the thick of the pre-game pep talk.
Even off the turf, this honorary captain -- eight-year-old Easton Schlein -- is 'on the ball' with a 'goal' to spread joy.
"When we see Easton leading us out to the pitch and in the huddles, he gives us that extra push to do it for him and make him happy," said UNCG soccer captain and central midfielder Jack Birch.
That happiness comes from a heart of gold, its radiance outshining deep scars.
A Broken Heart
"When we found out we were expecting, it was a little bit of surprise," reflected Schlein's mom, Julie Schlein.
Soon, that joy melted into fear, as doctors delivered unexpected news.
"Even after he was born, everything felt normal. We didn't know that he was going to be diagnosed in a few days with a heart defect," Julie Schlein said.
It was hypoplastic left heart syndrome (HLHS), an underdeveloped left side. Three surgeries over the next six months brought hope, before a big setback. His unresponsiveness after a nap revealed another stunning diagnosis -- brain cancer.
"He was a trooper through it all. He didn't know how to talk, even though he did before he went into that tough night," Julie Schlein said.
A "Super" Surgery
Rehab and 33 radiation rounds later, Easton Schlein rang in the next chapter and got back on track with heart care. But, as Boston Children's Hospital cardiologists prepared to do his biggest heart repair yet, they determined it likely wouldn't work. So, they invented another -- the first-of-its-kind...in the world.
"One of the questions we actually asked was, 'What do you call this surgery?' They (doctors) scratched their heads and said, 'I don't know yet.' Without missing a beat, my husband jumped in and said, 'Oh, well you can call it the Super Easton then,'" Julie Schlein smiled.
The Super Easton, or a "Reverse Double Switch 1.5 Ventricle Repair" was a success and now is credited with saving the lives of at least seven other children, according to Boston Children's Hospital's research on post-operative outcomes.
"We knew it could make a difference, if not in him then in kids like him," Julie Schlein said.
The procedure switches the heart chambers' roles to let the stronger side do the harder work.
"Now, the right side pumps saturated blood out to the rest of the body and the left side, since it's small...pumps blood to the lungs," explained Reid Chamberlain, MD.
Chamberlain helps continue Easton's care at home at Duke Children's Specialty Services in Greensboro.
He also is conducting groundbreaking research on CHDs, a quarter of which the CDC says are life-threatening.
"It's amazing to see what these kids can go through and still, on the other end, seem like they've never had heart surgery," Chamberlain said.
Hands for Hearts
Funding Chamberlain's work is a special fellowship with a local non-profit, operating with a shared heart to heal.
"I like to say we spend the money before we raise it. So, we commit well in advance so Duke (Health) can recruit the best and brightest doctors, not just in the Triad but the whole country," said Hands for Hearts co-founder Skotty Wannamaker.
For the last decade, Wannamaker, alongside his wife, Cameron Wannamaker and good friend Jeff Fusaiotti, have operated the organization pro-bono and hosted annual casino night fundraisers.
To date, they have raised more than $1 million, funding five Duke research fellowships in Greensboro, care packages for heart families in hospitals and summer camps for children recovering from CHDs.
"Our oldest daughter was born with a CHD. We realized there are so many kids who don't have a chance to not only meet kids like them and families to meet each other but just have the help and support they need," said Cameron Wannamaker.
Healing Hearts
They established the organization because their own hearts needed healing, too.
"We just wanted to make a difference and honor our friend Matt Sullivan," Skotty Wannamaker reflected.
Sullivan died in a motorcycle wreck in January 2014.
"It's so hard, because he's here one day and gone the next. So, that's been something we carry every day. I think of him every moment of every day," shared Sullivan's mother, Kathleen Little.
Little's grandson (Matt Sullivan's nephew) Nick LaRose, was born with a heart hole and missing a pulmonary artery. LaRose is now 12 and thriving, a testament to his uncle's legacy through Hands for Hearts.
"He was just this beautiful spirit, and he lives on. He lives on through this charity," Little said.
Of the highly-anticipated annual Hands for Hearts casino nights and hugely-successful non-profit, Little thinks her son would be flattered.
"Matt was a very humble person. I think he would be (like), 'Come on,' but I know he is loving every minute of it, and I know he's proud," Little said.
She believes he'd be especially proud of progress in children like Easton Schlein, who share his zest for life, and proud of their parents who walk the journey every step of the way.
"My best advice (to other heart parents) would be taking one step at a time and seeing it as a journey together," said Julie Schlein.
As all heart warrior families and supporters know, each journey is one led bravely...by a superhero of hearts, not missing a beat to save lives.
Casino Night 2024
Easton Schlein will soon swap his cape for a crown, as the "King of Hearts" for this year's casino night. Joining him as a fellow CHD warrior, Queen of Hearts Lydia, who also receives care at Duke Health in Greensboro.
Anyone is invited to this year's casino night event, though as of this week, it is sold out and has a wait list. It is Sat., Feb. 24 from 6 to 10 p.m., followed by an after party with the famed band Weekend Excursion from 10 p.m. to midnight.
Bourbon raffle tickets are on sale now (purchasers do not have to be present at the event to win), and the organization welcomes and appreciates donations to support its mission.