With the help of his care team at N.C. Children’s Hospital, this 15-year-old track star from Bryson City demonstrates a chronic lung disease can't keep a good athlete down.

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.

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, in the 14 years since, 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, the high school sophomore is an active teenager. Just turned 15, he got his learner’s permit and started driving on his birthday. He’s run 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 where we 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.

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."

More about Ryan

Hometown: Bryson City, NC; Swain County — almost 600 miles roundtrip
Diagnosis: Cystic fibrosis
Primary pediatric specialties: Pulmonology; respiratory therapy
Frequency of visits: About once every three months; more frequently if needed due to illness
Favorite caregivers: Dr. George Retsch-Bogart, Ryan's primary pediatric pulmonologist
• Jim Ronk
, respiratory therapist
• Sherry McFadden
, nurse in the pulmonology clinic (the first person they met in clinic when Ryan was just 2 months old)
Favorite thing about N.C. Children's Hospital: "Our favorite thing is definitely the care that he gets. Ryan loves Dr. Retsch-Bogart and Jim who does his pulmonary function tests!" ~ Ryan’s mom, Kathy

Pulmonology care at N.C. Children's Hospital

The Division of Pediatric Pulmonology at UNC is nationally recognized as one of the country's best, ranked among the top 10 programs for children with respiratory disorders by U.S. News & World Report on its 2011-2012 "America's Best Children's Hospitals" list. That is the highest ranking of any pediatric program in the entire state!

The Division of Pediatric Pulmonology provides state of the art diagnosis and treatment of lung disease in children, as well as cutting edge research into many aspects of pulmonary disease. Our medical experts treat patients from newborn to young adult and care for a variety of common and uncommon problems including asthma, lung disease of prematurity, and cystic fibrosis, managing complex pulmonary disease in the context of a multidisciplinary team including experts in nutrition, physical therapy, speech pathology and social work. Learn more about pediatric pulmonology at UNC.

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