The Great Strides for Cystic Fibrosis walk is Sunday, May 18, at Liberty Park.
“Cystic fibrosis is a genetic disease that affects one out of 25 people,” reports Linda Schomber, Batesville, chairperson of the local event, whose niece, Jenna Puente, 11, Batesville, was diagnosed four years ago. “It primarily affects the respiratory system, but can affect the digestive system, also. Mucus builds up in the lungs and is suspect to bacterial growth. It is life-threatening.”
Mike Frondorf’s daughter, Heidi, was diagnosed with CF at age 4. The Northern Kentucky resident, who works at Hill-Rom Holdings, Batesville, recalls, “Her general health was poor. She had a blood transfusion, and she was just not doing well.”
He and his wife took her to Cincinnati Children’s Hospital Medical Center. “My wife was a nurse, and she recommended she be tested for CF,” but doctors didn’t think that was what she had. The parents insisted she be tested, and the results came back positive.
“Heidi had to take digestive enzymes.” At first for her daily chest physical therapy, her parents had to pound on her chest and back over and over to dislodge the mucus from her lungs. “After about a year, we got one of the therapy vests (called The Vest and made by his company) .... She has to inhale a saline solution and takes azithromycin (an antibiotic) every day.
“She has been a competitive gymnast most of her life, since she was 4 years old. This has helped her because it’s important for those who have CF to stay active and keep their lungs clear.”
Frondorf’s daughter is now 21 and will graduate from Xavier University May 17 with a degree in nursing.
He encourages the public to support the Great Strides walk because “the Cystic Fibrosis Foundation has been extremely successful in getting the results we need, and 90 cents of every dollar raised goes into research .... Twenty years ago, the mean life expectancy for those with CF was 29 years old. Now it’s 41. There are new drugs that will help out.”