ROCK ISLAND, ILL - Imagine being 12 years of age and being told that you might not make it to your 18th birthday.
This was the news given to Kiley and his family when his parents, fed up with other doctors, finally took him to Iowa City. They knew something was wrong but despite insisting upon the possibility of Cystic Fibrosis with the local doctors, nobody had listened.
Kiley Lyon was born in 1972 and the first 12 years of his life were rough. Those years were inundated with lots of sickness, from colds, flus, ear infections, bronchitis, and a couple bouts of pneumonia, one of which stopped his breathing. So, when Kiley was told he had Cystic Fibrosis, despite the fact that the average life span at that time was 18 years, he was relieved, “I finally knew why I always felt terrible, had so many illnesses, and, at that time, started to cough up a lot of phlegm.” Iowa City admitted him that moment and that first appointment turned into a four week hospital stay.
Being diagnosed with Cystic Fibrosis did not slow down this active child. “I grew up in the middle of nowhere, around the back waters of the Mississippi. I climbed trees, went canoeing to the small islands and sometimes stayed overnight out there. I was always doing something, which also meant that I was also breaking something,” said Kiley with a wry smile, who has broken about 10 bones. Kiley’s parents did not hold him back, nor tell him he could not do something because of his CF.
Kiley has also developed a very regimented workout schedule. “I am in the gym almost seven days a week and do combinations of weights and cardio. Working out is what has helped me to control my CF and not let my CF control or dictate my life.”
In 2008, Kiley met his wife, Karen and they wed in 2012. “That was the best day, we had so much fun. Even though it was hotter than ever!” Kiley recalls. In the almost 5 years they’ve been married, Kiley confesses it has been quite an adventure. There have been ups and downs, of course, but he would not have anyone else beside him. Both of them enjoy spending time with their four “fur babies,” one of those being a Chesapeake Bay Retriever named Cocoa.
“I am 44 years old now and hover around 28-32% capacity. Sometimes I am not sure how I was able to sustain such a fast pace for so long.” Kiley does attribute all of his time at the gym for most of that sustainability, as well as playing in lots of racquetball tournaments until he reached 51%. Lately, the decline in his capacity percentage has led Kiley to begin the evaluation and testing for being listed on the transplant list. He likens this point in his life to when he was 12, “It was very sobering when I was told my life was at risk before I was a teenager, but I took that challenge and for the next 32 years tried to master it. For now, I am trying to keep myself up and as good as possible to give myself the best chance for the transplant to be successful.” Which is why, Kiley, who is the 1000th recipient of the CFLF Recreation Grant, has chosen to use the grant to pay for a one-year membership to his gym.
The CFLF is an independent 501(c) 3 non-profit organization that assists in providing avenues toward healthy and active lifestyles through recreation, thereby empowering and educating people with Cystic Fibrosis on the critical psychological, social, and emotional connections between their lifestyle and their health.
With the tagline “Living Stronger! Living Longer!”, the founder and adult with Cystic Fibrosis, Brian Callanan seeks to provide better quality of life through active lifestyles. Having bicycled from Canada to Key West in 2006, Callanan raised funds to begin providing financial assistance to the CF community for pursuing exercise-based activities as a supplemental means of clearing the lungs, but also becoming stronger socially and emotionally in dealing with the disease.
In 2013, the organization relocated its headquarters from Vermont to Miami Beach with Callanan pursuing the known benefit of salt water on clearing airway congestion. Since the program began in 2007, over $500,000 has been provided nationally to now over 1,000 patients helping with direct assistance with activity related costs.
Cystic Fibrosis is a genetic disease that has a chronic and terminal affect on the lungs and digestive system. Only a few decades ago, people with CF were not expected to reach their 10th birthday. But today, people like Yamelys are likely to live into their 40s, and beyond. With only 30,000 cases in the United States, CF is considered an orphan disease, with limited awareness and public support.
The disease is most commonly marked by the chronic congestion of airways with thick and sticky mucus and the compromised ability to digest and absorb food. Complications also include the development of CF related diabetes, arthritis, liver and kidney problems, isolation, depression and anxiety. Patients must endure a regimen of chest physiotherapy twice daily, handfuls of digestive enzyme capsules and vitamin supplements, as well as nebulized medications, IV antibiotics, insulin shots, and frequent hospitalizations.
While there is currently no cure for the fatal disease, exciting medical advancements, along with patient support programs like the CFLF Recreation Grants, enable patients to continually see a longer and brighter future.
To learn more visit www.CFLF.org, or call us at (802) 310-5983.
Brian Callanan (Founder & Executive Director)
802-310-4905
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