NNY native, cystic fibrosis advocate leaves behind inspirational legacy | Health Matters

WATERTOWN — City native John Stephen O’Neill defied the odds up until Sunday when he died at his home in Kettering, Ohio, at the age of 70.

On his 70th birthday on March 23, the mayor of Kettering declared the day “John O’Neil Day” for the inspiration he showed in his lifelong battle with cystic fibrosis and for the hope and encouragement he brought to others with, and without, the disease.

“He was just an inspirational guy because he had so many reasons to be unhappy, mad at the world and God,” said lifelong friend Marty Croyle. “And yet when you got off the phone with him, you felt like any issues you had were quite trivial.”

O’Neill was the oldest of four sons of former Watertown residents John F. O’Neill and Constance Exley O’Neill, younger sister of the late author Frederick E. Exley. He was diagnosed with cystic fibrosis five days after birth. His parents were told not to expect him to live much past kindergarten.

Cystic fibrosis is a progressive, genetic disease that affects the lungs, pancreas and other organs. There are close to 40,000 children and adults living with the disease in the U.S.

The latest registry data at the nonprofit Cystic Fibrosis Foundation reflect steady gains in survival for people with CF. Based on 2023 data, the median age of survival for people with CF who were born between 2019 and 2023 is predicted to be 61 years. But the foundation notes that to understand what the data means, it’s important to understand how the median age number is calculated and what it represents. A median is the middle number in a number set. So, of all the babies with CF born between 2019 and 2023, the foundation predicts that half will live longer than age 61 and half will die before that age.

The above data is a notable improvement from what the Watertown Daily Times reported in 2009: In 2008, the median predicted age of survival for CF sufferers rose to 37.4 years, up from 32 in 2000.

O’Neill graduated from Watertown High School in 1972. After graduating from SUNY Oswego, he took a job in Dayton, Ohio as a computer systems analyst at NCR Corp. He married there and became the father of two daughters. He was forced to take a medical retirement in 1993 when his lung function hit the low-20s percentage. In 1995, he was given a deceased donor’s healthy set of lungs in a nine-hour operation at Barnes Hospital/Washington University School of Medicine in St. Louis, Missouri. However, the operation left him blind. Physicians speculated it may have been caused when his blood pressure dropped very low during surgery. He eventually shrugged off the blindness as “stuff happens.”

In 2006, O’Neill was diagnosed with non-Hodgkins lymphoma and colon cancer. That was three years after he underwent a kidney transplant. In a 2009 interview with the Watertown Daily Times, O’Neill said the immunosuppressive drugs he was taking because of the lung transplant led to kidney problems and the kidney transplant. But he had found the perfect match for the kidney donation: his second wife, Carol, a nurse, whom he married in 1999.

O’Neill served on the board of the Cystic Fibrosis Foundation and contributed tirelessly to the Charity Concert for Cystic Fibrosis held annually at the Fraze Pavilion in Kettering, Ohio.

Ted Meylor of New Jersey first got to know O’Neill at a young age. “Steve’s mother and my mother were nursing students at Mercy Hospital together, graduated and then worked together for several years, first at the hospital and then a local doctor.”

Meylor and O’Neill kept in touch over the years. “His legacy means never get down. Never stop trying, pushing.” Meylor said. “He had many medical and physical obstacles thrown at him, times when his physical body wasn’t working well but he never lost his spirit and he was always encouraging to everybody else too.”

When O’Neill reached the age of 65, a friend of his, Tom Coffing, made a video (wdt.me/ONeill) about what he faced in life. Croyle, who had a career in the Boston area and recently purchased a seasonal residence in Florida, watched it again after receiving word of his friend’s death. “I sent that video to my kids when I first got it from Steve,” Croyle said. “I said, ‘Whenever you are having a bad day and feeling sorry for yourself, watch this video.’”

Croyle also shared part of an email he received from his friend in 2017:

“Actually, this is what I plan on putting on my tombstone: The doctors finally got it right! Explanation, since I have been told my entire life that I will not live much longer, I thought that my tombstone declaration was fitting.”

According to O’Neill’s obituary, a celebration of life service will be held at Southbrook Church when confirmed, 9095 Washington Church Road, Miamisburg, Ohio. A memorial in Watertown will be held in early summer.