TOPEKA, Kan. (WIBW) - Every day, new research and earlier interventions are giving young heart patients like Brody Keil a fighting chance.
Brody's dad, Chris, says he and wife Jess learned right away that Brody's long fingers and limbs meant something was different. But when doctors asked them if Marfan's Syndrome ran in their family, they had no idea what it was.
Marfans is a connective tissue disorder that affects the limbs and joints and, in Brody's case, the heart. Doctors said he'd need surgery in his first years of life and painted a bleak picture.
Chris recalls that doctors told them Brody's condition was so severe that research didn't support kids that young surviving the type of surgery he would need and that the family needed to have, in the back of their minds, funeral arrangements in case he didn't survive.
Brody spent two weeks in Stormont-Vail's NICU, then went home facing an uncertain future. By 14 months, he was going into heart failure and was flown to Johns Hopkins in Baltimore for surgery.
"That was probably the worst moment of my life," Jess says, "having to hand your kid over and you don't know if you're going to see him again."
Chris recalled the shock of seeing all the tubes and wires attached to Brody when he came out of surgery. But once they were shed, he says, his little boy was a different person. He says Brody has a lot more energy now and his personality is shining through more than ever.
The Keils say it's only because of the support they've received along the way from the community and organizations like the American Heart Association. They say AHA helped open up networks of doctors and, most of all, provided education and information along the way.
"It helps so much," Jess said. "It gives kids like Brody a chance."
To donate to or volunteer with Topeka's American Heart Association chapter, call 785-228-3435.