No one was more surprised than Dane Farlee when the 11-year-old from Fort Wayne was announced as a Riley Champion at this year’s Northeast Indiana Riley Luncheon.
“When they called my name, I was just shocked and excited,” he recalls. “I had no idea!”
Dane’s Riley journey began before he can remember. Born a month early, doctors heard a heart murmur and discovered Dane’s aorta was 10 times too narrow, causing a condition called critical aortic stenosis.
“The doctor drew me a picture of a house and said, ‘This is your son’s heart, and this doorway isn’t big enough,’” remembers mom Lynn Farlee.
Dane was rushed to Riley Hospital for Children at Indiana University Health, where, at just 9 days old and his heart the size of a walnut, he underwent the first of three surgeries with Pediatric Cardiovascular Surgeon Mark Turrentine, M.D.
“It was an eight-hour operation, and they came out every single hour to update us,” Lynn recalls. “They were so good about letting us know what was going on. They called from the operating room the minute it was done.”
Dane remained at Riley for five weeks. He had his second surgery at 14 months old and then, at 3 years old, he received a replacement valve, which should last until he’s a teenager.
“One of my first memories ever is being at Riley,” Dane says. “I remember the food. Even when I knew I wouldn’t be able to keep it down, I’d tell them, ‘At least it’ll taste good while I eat it!’”
The Farlee family has supported Riley at events across Indiana, including Fort Wayne’s Run for Riley and the Riley Radiothon. Dane’s favorite is the Indiana University Dance Marathon – this will be his 10th year attending – where he shares his Riley experience with the huge crowd.
“He loves being up there and loves telling his story, and he loves showing people the scar on his chest,” Lynn laughs.
As a Riley Champion, Dane hopes to inspire others to support Riley’s mission.
“To the donors, I just say, ‘Thanks,’” he says. “Kids like me have hope because of people who give to Riley.”