​​Kettering man with cystic fibrosis a ‘walking miracle’

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​​Kettering man with cystic fibrosis a ‘walking miracle’

Celebrity Concert for Charity

Since its onset, the annual Celebrity Concert for Charity has raised more than $800,000 and brought big-name celebrity acts to Dayton including America, Smokey Robinson, REO Speedwagon and the Little River Band. The 17th annual concert, to be held at Fraze Pavilion on Aug. 3, will feature Kenny Loggins, a longtime campaigner in the fight against cystic fibrosis. Tickets are available by logging on to fraze.com.

POSITIVE NEWS

The Dayton Daily News brings you uplifting human interest news every Thursday in Life.

​​When Kettering resident John O’Neill was born in Florida in 1954, a diagnosis of cystic fibrosis meant an extremely shortened life span.

“I was diagnosed with CF at six months old,” O’Neill said. “Doctors told my parents I wouldn’t live to go to kindergarten.”

People with cystic fibrosis inherit a defective gene that causes a buildup of thick mucus in the lungs and other organs. The thick mucus traps bacteria in the airways, which can result in infections and inflammation and often leads to severe lung damage. People with cystic fibrosis also often have malnutrition and poor growth.

O’Neill dealt with frequent serious respiratory illnesses like pneumonia and also hospital stays during his first two years. But O’Neill said his parents told him they never thought about losing him. “They were both young and wanted to have a big family,” he said. “My dad worked extra jobs so they could afford my medicine and they did what they could.”

The family decided to return to their hometown of Watertown, N.Y., because the Florida climate wasn’t good for O’Neill’s lungs. “Both of my parents were CF carriers, so having more children was like rolling the dice,” O’Neill said. He ended up with three younger brothers, none of whom have the disease.

O’Neill continued to beat the odds, even as a young child. “I went to New York City to get treatments once a year,” he said. “I would get a cold every year, but I was relatively healthy as a kid.”

Because he knew his energy level would likely continue to decline, O’Neill planned for a career that would not be physically challenging. “I tried to streamline my life and stay in school because I knew I needed to have a job to have an independent life,” he said. “Computers are usually in air conditioned areas and that would be good for me.”

O’Neill graduated from a local college with a degree in computer science and ended up moving to Dayton in 1977 after securing a job with NCR. At the age of 23 he was a gainfully employed college graduate, and he had surpassed his original live expectancy by nearly two decades.

He did well until late 1992 when his lungs were deteriorating rapidly. “My lung function was about 20 percent, and the doctors said if I wanted to live very much longer, I would need a double lung transplant,” O’Neill said.

O’Neill went to St. Louis and received his new lungs on Labor Day weekend of 1995. Having taken a medical retirement from NCR, he was hoping to return to work after the transplant, but he had a complication during surgery.

“I woke up blind, and doctors didn’t really know why,” O’Neill said. “I had a longer recovery period, because I had to deal with learning how to use a cane to get around. It was an incredible adjustment.”

The new lungs made life much better for O’Neill, though the blindness made it difficult for him to help care for his young daughters, Katie and Maura, then only 7 and 3 years old. Today his lungs function at 60 percent, which he said is “plenty for a guy who doesn’t run.”

And though doctors told him he was rejecting his new lungs just a year after surgery, O’Neil again beat the odds. “Sometimes what they tell you is just a number and you have to do the best you can to deal with it,” he said.

O’Neill has had multiple complications, including kidney failure caused by anti-rejection drugs, a subsequent kidney transplant and in 2006, and he was diagnosed with colon cancer, for which he received treatment and is now in remission.

O’Neill’s friend John Condit said that O’Neill is a “walking miracle.” Condit was instrumental in creating the Celebrity Concert for Charity, held at the Fraze Pavilion each summer.

Condit said that O’Neill “has gone through not only a double lung transplant but also the incredible trial of losing his eyesight. Through it all he has shown patience, humility and humor.”

Condit, along with his wife Chris, who lost two siblings to CF, O’Neill and a core group of volunteers created the event in 1998 as a karaoke night. “I decided to put all my efforts into CF and supporting finding a cure,” he said.

“The life expectancy of a child born with cystic fibrosis today is around 37,” O’Neill said. “I think most kids born with it today will have a normal life.”

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