Five children, a thriving fast-food restaurant and prime high school coaching position would keep any parents busy. But Tony and Shelly Holmes of Apex are busier than most. Their two youngest children, Leah, 2, and Elijah, five months, live with cystic fibrosis, an inherited disease that affects the lungs and digestive system.If they weren’t already busy enough, Tony and Shelly are coordinating and sponsoring the first Cystic Fibrosis Walk in Apex on May 30 at Apex High School.“CF can be cured or improved the way we deal with asthma,” Shelly Holmes said. “Many people are carriers, and we hope people will want to find out more. I hope the walk grows and grows.”The Holmeses had three healthy children: Noah, now in second grade; Rachel in first grade and Isaac in preschool. But Tony and Shelly, an Apex native, had always dreamed of having six children and all the chaos and blessings that go along with a large family.Tony, who owns the Beaver Creek Chick Fil-A, and Shelly, who coaches junior varsity girls’ basketball at Apex High School, did not think much about early concerns after their fourth child was born in May 2006. When Leah was only six weeks old, her failure to thrive sent the Holmes family to the hospital to find out what was wrong. While still in the hospital, Leah’s physician told them the diagnosis.“I didn’t know anything about cystic fibrosis,” said Tony. “When we heard the news, our doctor said, ‘Don’t go home and Google it.’”Early on, Leah spent about four weeks in the hospital for a lung infection, a common problem for CF patients. Thick mucus can build up and cause life-threatening infections.Shelly and Tony learned quickly: Each day, for 30 minutes in the morning and 30 more at night, they provide chest compressions with their cupped palms. A popping sound, as opposed to a slap, helps move the mucus so the bacteria do not sit in the same place. When Leah was a baby and now with Elijah, both parents have experienced strange looks from people as they perform the necessary physical therapy in public.“We have been blessed with all the research that has been done in the last five to 10 years,” Tony said.He said a partnership with Leah’s UNC Health Care physicians and Australian researchers got Leah included in a test. In Australia, they found that surfers who spent a lot of time near salty water reported fewer CF symptoms. The resulting use of nebulised hypertonic saline to break up mucus has made a difference in Leah’s case.By the time Elijah was born, the Holmes family knew the genetic component was a concern. Doctors tested his cord blood just after his birth and diagnosed CF.Apex coach Scott Campbell, who coached Shelly in high school and now works with her, helped coordinate a charity basketball game in January for CF research as a result of the Holmeses’ challenges. “They have really touched our hearts,” said Campbell of the Holmes family. “Nothing seems to faze them; I think their biggest strength is their faith.”Faith and determination: Shelly and Tony take each day as it comes.Today, Leah and Elijah must do the same 30 minutes morning and evening of chest compressions. Leah now wears a vest that performs the compressions for her. A parent provides compressions for Elijah until he gets older.Both children must also take enzymes. In healthy people, the pancreas releases enzymes that travel through a tube to break down fats in the stomach, but for those with CF like Leah and Elijah, mucus prevents the enzymes from being absorbed in the stomach.While Tony and Shelly are encouraged by strides already made in CF research, they pray for more. Roughly 30,000 people in the United States have cystic fibrosis, a relatively small number compared to other diseases.“People know about Lance Armstrong and Kay Yow,” said Tony. “But what is challenging is that many people with CF look healthy.”





