For a few minutes Waylon Rainey, red bow tie angled smartly over his white T-shirt, is the center of this particular universe. Bright camera lights make his faux hawk and brown eyes sparkle, and a half-dozen grown-ups try to get him to smile.
He holds up a chalkboard that reads "Chicks Dig Scars" and has red heart-shaped patches on his pants to bring attention to Congenital Heart Disease Awareness Week, which is Feb. 7 to 14.
The American Heart Association is asking families to post their stories to YouTube to educate and spread awareness about the disease that affects one in 100 babies.
Waylon, 2, and his mom, Tabitha, joined eight other Central Kentucky families on a recent Saturday to create a video. Waylon was born with hypoplastic left heart syndrome and has had three surgeries to repair his heart. The difficulties following his birth have left him with developmental delays, and he is just learning to walk, laughing as he pushes a silver walker across the floor before the photo shoot.
Never miss a local story.
Tabitha Rainey led the effort to get the University of Kentucky to release mortality rates for the pediatric heart surgery program, which was shuttered in 2012. She continues to help inform and support other families by posting frequent updates on Waylon's progress on Facebook, as well as heart-related events and information.
Often parents of newborns aren't aware of the signs of a heart defect, she said. They can include high heart rates, a pale or blue appearance, and breathing that is too fast or too slow. With Waylon, she said, her midwife noticed signs of distress, and treatment began immediately after he was born.
But many families aren't so lucky, and that can be a matter of life and death, she said.
Kelsey Dyer, a Winchester photographer, volunteered to take the pictures and put together a video. Dyer, 23, has a scar from operations she had as a child to correct a heart defect that was discovered when she was a baby.
She hopes to show that, even though dealing with heart disease is challenging, people can lead productive lives.
"I want to put a face on congenital heart disease," said Dyer. "We've seen it, we've lived it and we are strong."
Sara Walden's son, Kyle Rogers, went into cardiac arrest shortly after he was born. In the six years since, Kyle has had multiple surgeries, two pacemakers and, finally, in 2013, a heart transplant.
Sara Walden had tears in her eyes as she waited for Kyle's turn in the spotlight. For much of his life, Kyle has been too sick to be able to do the most basic things with other kids.
"This is the first CHD (congenital heart disease) thing he has been able to participate in," she said.
Walden said her family raised $10,000 to help cover the cost of staying in Nashville near Vanderbilt University Hospital, where Kyle received a new heart. She hopes the video and the awareness week help other families know they are not the only ones coping with heart disease.