Initially, Evan’s doctor near his home in Indiana diagnosed him with biliary atresia, a rare disease of the liver and bile ducts that affects infants. Evan’s mom, however, a teacher, wasn’t convinced it was the right diagnosis and searched for a hospital with pediatric liver expertise. She found it at Cincinnati Children’s.
William Balistreri, MD, director emeritus of the Pediatric Liver Care Center at Cincinnati Children’s, and his gastroenterology team made the Alagille diagnosis based on the clinical criteria for the syndrome, including Evan’s related medical issues.
Dr. Balistreri brought in specialists from across Cincinnati Children’s to help meet Evan’s needs as they developed, including nephrology to monitor his chronic kidney disease and cardiology to manage his congenital heart condition, tetralogy of Fallot (TOF), a combination of four related heart defects that commonly occur together—and commonly alongside Alagille.
“The coordination of care we’ve been able to provide Evan, as a child and as an adolescent and, now, as an adult, has helped him get to a point where there’s really nothing he can’t do,” said Evan’s cardiologist, Russel Hirsch, MD, director of pulmonary hypertension service at Cincinnati Children’s.
Dr. Balistreri has known Evan for a long time, ever since he took over Evan’s care more than 20 years ago.
He gives massive credit to Evan's parents for their unrelenting pursuit of care for their son. And what has always struck him most about Evan is his resilience over the years.
“Evan has developed significant coping skills,” Dr. Balistreri said. “He’s adapted to everything, and he’s been very inspiring to me. You can see it in his eyes, this sentiment of ‘I’m going to deal with this. Nothing’s going to stop me.’”
Setting Goals
Since he can remember, Evan has loved two things: video games and music. In grade school, he started learning to play the guitar. In sixth grade, he played percussion in his school’s concert band. When he was in the eighth grade and as a freshman, Evan played in the jazz band. Then, sophomore year, he joined his school’s marching band, playing bass guitar.
“It was a goal of mine to march by the fall of my junior year,” he said. “I just wanted to experience marching in the marching band.”