Firefighter Helps Son Battle Disease
LoHud.com 6/21/09
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Peter Kearney spends time with his children, Brian, 12, left, Shannon, 10, and Kevin, 6, in their Orangeburg home. Kevin has been diagnosed with Duchenne muscular dystrophy, and Peter is an activist for the Muscular Dystrophy Association. (Angela Gaul The Journal News) |
Peter Kearney's mother has a saying: "God fits the back for the burden.
Kearney, a 45-year-old New York City fire captain and Orangeburg resident, has often reflected on those words during the past few years.
On 9/11, Kearney and his company were dispatched to the World Trade Center and arrived just as the second tower was falling. He spent nearly every day at Ground Zero for the subsequent months helping with rescue and recovery.
Then in April 2004, his youngest son, Kevin, was 18 months old when he was diagnosed with Duchenne muscular dystrophy, a genetic disease that is expected to eventually debilitate most of his muscle tissue.
"It was devastating," Kearney, a broad, almost indefatigably positive man with a firm handshake, said at his home Thursday about the diagnosis. "From there, our lives changed."
In 2005, Kearney went back to school and started taking one class a semester toward a nursing degree at Rockland Community College.
"What I hope to do with the degree is to be able to take care of Kevin," Kearney said. "As the disease progresses with Kevin, I want to be there for him, I want to be able to take care of him, I want to be an advocate for him."
Later that year, his family also took part in the Muscular Dystrophy Association's Stride & Ride fundraiser at the Palisades Center. The event has become a family tradition, and the Kearneys are often among the biggest fundraisers and have brought the largest groups to the walkathon.
From that first fundraiser, Kearney was asked to speak at a kickoff event in Westchester for a "Fill the Boot" campaign, a project run by the MDA and International Association of Fire Fighters. Jim McGowan and Steve Humenesky, two New York City firefighters and union representatives in the audience, heard his speech and told him they had to do something.
The three of them started "Fill the Boot" campaigns at the FDNY, where firefighters asked people on the street to fill their long boots with cash for the MDA. They also thought up the "$1 a Member per Meal" campaign, in which for one week every January firefighters around New York City donate an extra dollar when throwing in money for food.
Their fundraising efforts cumulatively net about $100,000 for the MDA and brought MDA fundraisers for the first time in recent memory to the FDNY, Kearney said.
Kearney is now a speaker at statewide "Fill the Boot" kickoff events in New York, New Jersey and Connecticut, his family regularly attends the MDA's annual telethon, and posters for annual fundraisers showing him and his son can be found at firehouses all over New York City.
The money raised goes to summer camp programs, clinics, support groups and resources for families - which are among the many services that the MDA provides for the Kearneys.
"He's not just a firefighter on a sponsor level with the IAFF, but he's also a dad," said Justine Carroll, an MDA regional coordinator who's worked closely with Kearney. "It's kind of twofold, and it means the world to have someone like that."
Kevin is now 6. He loves soccer, playing with his siblings - Brian, 12, and Shannon, 10 - and therapeutic horseback riding.
Because of his big smile and energetic attitude, it's not immediately noticeable that he has muscular dystrophy - though he walks slowly, has a hard time going up stairs and recently started using a wheelchair in school to get to and from classes.
Doctors say Kevin's life expectancy is in his young 20s. Though now a rambunctious youth, as the disease continues, it is expected to take more and more away from him and he'll need to use a walker, then a wheelchair.
Despite the financial difficulty of doing so, Kearney said the family will soon be making their home completely handicapped accessible, for the time when Kevin will need the extra help.
These are not things Kearney bothers to fixate on.
"I can't dwell on the negative, there's not enough time," he said, while sitting in the enclosed porch of his home that overlooks the backyard. "I would just like to keep proactive and find a cure for Duchenne muscular dystrophy."
On Thursday, Kevin was more interested in a Batman cartoon or playing with firetrucks with his siblings than answering questions. And when asked what he thought about his father's efforts, he had short answers, like, "Makes me happy."
His mother, Eileen, said her son is aware that he has muscular dystrophy but doesn't really know what it is, and so doesn't yet understand what his father has done for him.
Despite that, Kevin still probably said the few words that held the most meaning: "I love you" and "Happy Father's Day.
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