GREENSBORO, N.C. — At 18 months old James Giovan is on the move.
"He’s taking some of his first steps these days," his mom, Monica, said.
But like a baby taking his first steps life can be unstable.
"The past 18 months have been a unique challenge one that we had never faced," she said.
In just more than a year James has had three heart surgeries. His first happened when he was only five days old.
His mom, Monica, was 20 weeks pregnant when her doctor noticed a blockage in James’ heart. He was born with Shone’s Syndrome – or a collection of heart defects.
"It feels very out of control to not understand the things they’re saying to you,the terms, cardiac terms like stenosis and blood flow, pressures and understanding all of the very very complicated work that the cardiologists do."
James had two surgeries in the first five months of his life that left half of his heart pumping for his entire body. Those procedures were so successful that the other half of his heart grew stronger and he became the first patient in North Carolina to have those operations reversed.
Simply put, "They saved James’ life in no uncertain terms."
James is one of 40,000 kids born in the United States each year with a congenital heart defect (CHD). It’s the number one birth defect in our country and the world.
"You hear these statistics but until you see these children and you watch what they go through and you see them do these things that are a little bit harder and they do it with more style and grace than most kids," Skotty Wannamaker said. "It really impacts you."
Wannamaker helped start Hands For Hearts, a local organization that raises money to fund research, create a community for CHD families and sponsor a fellowship at Duke Children’s Hospital.
"The organization did already influence James’ care," Wannamaker said. "They were able to raise the money for a fellowship to fund one of the doctors that has given us direct care."
Monica learned about the organization while watching television.
"Actually through News 2," she said. "I saw a special on Hands For Hearts and James was already born at the time so it definitely caught my attention."
Now her son, James, is catching the attention of the Triad. He’s this year’s King of Hearts - an honorary title the organization gives two children to raise awareness. This year’s Queen of Hearts is 7-year-old Kolonee McRae who’s had six procedures to fix a very complicated congenital heart disease.
Their stories are unique but they’re not rare.
"Whereas one percent doesn’t sound like a lot – one out of every hundred kids – that’s a ton," Wannamaker said.
James is still trying to take a few steps but he (adorably) falls down more often than he stays standing. He may still be learning to walk but he’s already making big strides.
"He’s going to grow up to move mountains if we’re lucky," his mom said.
Hands For Hearts signature fundraiser, Casino Night, is Saturday, February 22 at 6:00 p.m. at Greensboro Country Club. Tickets are still being sold online at handsforhearts.org.