When Matt McCloskey, founder of Take a Breather Foundation and one of the co-founders of the Narberth Cystic Fibrosis Run, was born in 1968, little was known about cystic fibrosis (CF). When he was diagnosed with this rare disease at four months of age, the doctors told his parents that he probably wouldn't make it past his sixth birthday. Today, life expectancy is late 30s, early 40s for those living with CF.
"I turned 46 this past August," McCloskey shared in a phone interview. "I have always lived my life ahead of the curve. I consider myself one of the lucky ones."
Cystic fibrosis is an inherited, chronic disease that interferes with the respiratory, digestive and reproductive systems.
"The biggest challenge for those living with this disease is to stay healthy," he explained. "CF causes the body to produce a lot of mucus. They have to go through a daily regimen of medicine and treatments to clear it all out. If the mucus stays in the chest, it causes infections, and when that happens, these kids have to spend time in the hospital receiving IV antibiotics."
As a child, McCloskey was fortunate in that his disease didn't limit his normal boyhood pursuits. He played sports and kept very active with family and friends. It wasn't until he was in college that he was hospitalized. In recent years though, the progression of the disease has left him with only 20% lung function and now his doctors are urging him to consider a double lung transplant.
Because he knows firsthand the challenges of living with cystic fibrosis, he has made it his mission to provide hope and a little bit of magic to kids with CF through some wish fulfillment made possible from the money raised at the Narberth Cystic Fibrosis Run and through the Take a Breather Foundation, established in 2012 as an outgrowth of the run.
The Narberth Run actually began in 1995 as a part of the Narberth Centennial Celebration, but in 1996 it was adopted by McCloskey and two of his sisters. That first year, they sent their first child from the Children's Hospital of Pennsylvania to Disney World. Just in the last two years, they have granted 40 wishes.
"We work with CHOP, St. Christopher's Hospital and Robert Wood Johnson Hospital. The CF Teams there nominate the children," he explained. "This year we are also starting to work with duPont in Delaware."
As part of their wish fulfillment they have sent families to places like Paris, Bermuda, even the Atlantis resort in the Bahamas. Sometime the kids request things like a television or a chance to go to a sporting event and meet their favorite player.
On why they concentrate on fulfilling wishes instead of putting the money towards research for a cure, McCloskey said, "A doctor once said it best when he said that it gives a child a breather from the disease. He still has to do all the treatments, but can do it in a happy place."
"I was lucky. I was never hospitalized as a child. My first one wasn't until I was in college. Unfortunately for a lot of these kids that is not the way. They spend a lot of time in the hospital where they are quarantined in their room because of cross-contamination. For kids this is no fun at all."
"Seeing the kids' smiles is what is rewarding," McCloskey said. "The CF Foundation does a great job raising money and awareness for research for a cure. We help the kids with us today because unfortunately they won't all be with us when there is a cure."
The Narberth Cystic Fibrosis Run will take place this year on Saturday, April 25 at 9 a.m. at Narberth Park. The 5 mile run will take you through the streets of Narberth. There will also be a 1.5 mile walk, and a Kidz Run that will just loop around the inner perimeter of the park. Register online today. For more information visit narberthrun.com and takeabreather.net.