Ryan's Story

Jumping Hurdles: Track star doesn’t let CF prevent him from crossing the finish line

Born in July 1996 with a colon plug, N.C. Children’s Hospital patient, Ryan, was transported from his birth hospital in Sylva, N.C., to the NICU in Asheville. He endured three stomach surgeries before he was even a month old, and then a bigger blow to his parents, Ken and Kathy: tests showed Ryan had cystic fibrosis, or CF.

Ryan's Story

Cystic fibrosis is caused by an inherited gene defect which causes thick, sticky mucus to accumulate in the lungs and digestive tract. The chronic condition, affecting about 30,000 children and adults in the United States, hinders the body’s ability to break down and absorb food and can cause lung clogs leading life-threatening infections. There is no cure.

Luckily for Ryan and his family, UNC is an internationally renowned cystic fibrosis research and treatment center. Immediately after discharge from the hospital in Asheville, his family took their 2-month-old son to N.C. Children’s Hospital for what mom, Kathy, calls, "a week of cystic fibrosis training" with the pediatric pulmonology team.

Ryan returned to Asheville for another surgery at 4 months, and then it was to N.C. Children’s Hospital at 6 months for two weeks of IV antibiotics. Remarkably, since then, Ryan has only had two additional inpatient hospital stays, both at UNC—one at age 8 for a weekend and another short stay at age 12.

Despite having a chronic and life-threatening lung disease, Ryan is an active teenager. He ran track and cross country for his school since seventh grade and is working toward the completion of his Eagle Scout project—building a tool shed for a hospitality house in Asheville, where the family stayed for almost two months while he was in the NICU all those years ago.

On top of all this, Ryan is an excellent student and involved in several extracurricular activities, including a leadership position with 4-H. He recently attended a two-day youth retreat to discuss youth issues and suggested resolutions with members from counties from western North Carolina. He additionally attended the Annual North Carolina Association of County Commissioners meeting in Concord, N.C., in August to discuss those issues with the commissioners from their areas—a tremendous honor, as each county was limited to selecting one delegate. Because of his good grades, Ryan was also selected as a Student Ambassador for People for People.

Ryan's Story

Because of his remarkable achievements as a patient, student and athlete, his pediatric pulmonology team arranged for Ryan to meet the head coach of UNC’s track and cross country teams during a visit to the Children’s Hospital in fall of 2010. Ryan met many college athletes during the visit and got the star treatment with a tour of the track and field house. It was the thrill of his life.

"That was really fun," says Ryan. "It was the first time I ever got to do something like that."

Ryan continues his routine care with the pulmonology specialists at N.C. Children’s Hospital every three months, making the six-hour each way journey from their home in Bryson City, N.C., to UNC—and even more often if Ryan experiences anything out of the ordinary. While they could receive treatment closer to home, the family chooses to continue Ryan’s care at N.C. Children’s Hospital.

"I think his doctor (Dr. George Retsch-Bogart) is just so wonderful," says Ryan’s mother, Kathy. "As big as that hospital is and as busy as they are, everyone is so personable and takes the time with us on every visit."

Ryan agrees. "He (Retsch-Bogart) is a really good doctor, really is careful and caring."

"I’d drive as long as I have to get Ryan the best care in the world," adds Kathy, "and we get it at UNC."