Narberth Cystic Fibrosis Run Celebrates Progress Against Cystic Fibrosis
The Narberth Cystic Fibrosis Run will celebrate its 20th year on April 25th, with proceeds to fund granting wishes to children suffering from CF and their families. To date, the Take A Breather Foundation and the Narberth Cystic Fibrosis Run held at Narberth Park in Narberth, Pennsylvania have granted more than 120 wishes.
The Run was first held in 1995 as one of the events celebrating Narberth’s Centennial, but quickly developed into a yearly event celebrating life. In 1996 the Narberth Cystic Fibrosis Run was adopted by siblings Ame Austin, Molly McBryan and their brother Matt McCloskey, who lives with CF.
Mr. McCloskey has been fortunate to have lived the sort of healthy and active childhood that eludes so many children with CF, who miss out on physical activities due to complications from their illness and the frequent hospital stays this disease demands. While the Run began as a student project, its underlying purpose has always been to give back to the Cystic Fibrosis community. The organizers say the decision to help these children quickly became their primary motivating factor and inspired the dedication of many others.
Thus, the Run’s mission was established: to fulfill wishes and dreams of children living with CF by providing them with a respite from the havoc CF imposes on their young lives. Thanks to a dedicated group of friends and families, the Narberth Cystic Fibrosis Run became an annual event attracting close to 1,000 participants. More than just a run, the day has grown into a gathering of families, friends and community coming together on a Saturday morning in April to support a praiseworthy cause.
Upon completion, the John A. Nardi Jr. Memorial Award is presented to the Top Male and Female Finishers. John Nardi was a Narberth native and childhood friend of Matthew McCloskey who fought a courageous but losing battle against Cystic Fibrosis and the award is presented each year to honor his spirit and courage.
Today, the Run organizers work closely with social workers from three local CF Centers to identify children who will most benefit from wish funding, and the 120-plus wishes granted to date have included computers, family vacations to Disney, and bedroom makeovers.
Matthew McCloskey observes that in 1968 when he was born, very little was known about cystic fibrosis, other than it was an early death sentence for most. Matt McCloskey’s mother Marie McCloskey notes that at the time of his CF diagnosis, life expectancy for persons diagnosed with Cystic Fibrosis was six years, and children with CF rarely lived long enough to attend elementary school.
At the time, the CF Foundation was still in its infancy and very few medications were available to treat the disease — all of which he was unaware due to a conscious decision by his parents to raise him with the same amount of love, guidance and expectations as his four siblings. Ms. McLoskey notes that as Matthew grew, he always accepted CF, and what that acceptance entails, as just part of his life, perhaps partly because of his easygoing personality, or having been diagnosed so early that CF routines are all he has ever known. McCloskey recalls that as a teenager, treatments and taking meds were never an issue for him — just part of his daily routine like brushing teeth, getting dressed and showering. “I didn’t know any different,” he says. “I did my treatments twice a day mainly to appease my mother.”
He recalls that happily, CF played a very limited role in his childhood, and his outdoor activity was his real therapy. He was active in sports, boyhood mischief, and general roughhousing with friends, punctuated only by visits to The Children’s Hospital of Philadelphia for CF Check-ups six times a year.
Ms. McCloskey relates that Matthew played soccer and football in grade school, but football was his sport of choice, and as soon as he could he joined the grade school football team, and continued to play football throughout high school.
The McCloskey family also annually spent six-week summer vacations in Longport, a seaside town on southern New Jersey’s Atlantic Jersey Shore, and Matthew says he came away from those summers with some of his best memories and some pretty good stories, and he still spends time at his family’s home there every chance he gets. He says he finds being near the ocean therapeutic, and often wonders if spending his childhood breathing salt air had a positive effect on his developing lungs, noting that the beach was also where he met his wife Chris who he married after graduating college.
Matthew McCloskey’s first hospitalization for CF did not occur until his freshman year of college at La Salle University where he says he had been enjoying his freedom “a wee bit too much.”
However, he recalls being devastated when his friend John Nardi, who also had CF, died, both because the loss, and also scared that this would happen to him as well. As noted above, John Nardi is memorialized annually by the John A. Nardi, Jr. Memorial Wish to a child living with CF.
Matt McCloskey says he has never let cystic Fibrosis stand in his way, and never tried to hide his disease. He says he figures if he made it an issue, it would become an issue, but neither has he gone around telling everyone he meets that he has CF — just those who needed to know. His family and friends were completely supportive and to McCloskey that’s all that mattered.
Nevertheless, he affirms that now aged 46 the disease has progressed significantly over the past few years, obliging him to cut back on work, and struggle more with daily living activities. His lung function is down to 20 percent, and his doctors are encouraging him to get on the list for a double lung transplant, but he says that whatever the unknown world of transplantation holds for him in the future, he has “lived an awesome life surrounded by love, support, and the greatest of friendships. I know as I enter this, I am at peace with all the outcomes,” and “If my story can bring hope to just one person out there, then it’s been a pretty good day.”
Narberth Cystic Fibrosis Run
Take A Breather Foundation