November 29, 2006

Pennies for Patrick Kelly

Catching a common cold could kill Patrick Kelly.

The five-year-old Hampton Bays boy, like so many children his age, has big dreams about what he wants to be when he grows up — an astronaut or a surgeon — is a whiz on the computer, and favors kid-friendly foods such as ice cream and macaroni and cheese.

But, unlike his peers, Patrick has been fighting a battle for survival every day of his young life — and has beaten the odds.

Patrick's story, said his mother, Fran Kelly, is "not a pity story," but instead, "a success story. Patrick is an inspiration. He's just a normal kid in a body that doesn't work properly."

Since the day Patrick was born with myotubular myopothy x-linked, a rare genetic disorder, although he has faced seemingly insurmountable challenges, it is the unflagging can-do spirit of his parents, Fran and Noel, that has helped their son to soar far beyond doctors' expectations.

"They told us he'd probably be deaf, blind and mentally disabled," said Fran Kelly. "He had no reflexes, couldn't move a muscle, couldn't swallow."

At 17 days old, Patrick was brought home, and although he had physical disabilities, he was blinking and was able to suck a bottle, albeit slowly. "During midnight feedings, two ounces would take two hours, but he plugged along," she said.

At 17 months, Patrick contracted pneumonia and spent 93 days back in Stony Brook's pediatric intensive care unit, where his parents made the difficult decision for their son to undergo a tracheotomy. Although the decision over whether or not to "trach" Patrick wasn't easy, in their hearts, the Kellys knew they had only one option.

"By 17 months, we knew Patrick could hear. He could talk, and say Mama and Dada," said Kelly. "He was cognitively absolutely right where he should be — he just wasn't there physically."

After a resident told Patrick's mother that her son could have a quality life with a trach, his parents agreed to let him undergo the procedure, and it's paid off: "Patrick has been unbelievable since."

Still, there have been setbacks despite his unheralded successes. Because he's trached, just catching a common cold from another child could cause a major setback and life-threatening illness; currently, Patrick is home-schooled with the assistance of two Hampton Bays school district teachers, and receives both physical and speech therapy.

Providing their son with quality of life has always been a critical concern. To that end, one huge obstacle faced by the Kelly family is that their van is not handicap accessible and it is becoming more difficult to transport Patrick, who, at five, is over four feet tall and sixty pounds. Trying to maneuver him into the van has proven injurious, with Patrick hitting his head and becoming bruised under his arms.

Not knowing where to turn, Kelly began researching grants and making inquiries. After meeting Kerry Wilkie of the Hampton Bays Mothers' Association, Wilkie made it her mission to secure a van for Patrick.

To that end, a fundraiser is being organized by the HBMA and owner Mark Shortall at Buckley's Inn Between in Hampton Bays on January 14 from 6 to 8 p.m. Monetary donations and Chinese auction prizes are needed. In addition, East Quogue, Our Lady of the Hamptons, and Hampton Bays schoolchildren will be collecting pennies for Patrick every Friday throughout December.

"When a cause like this finds us, we'll do what we can to fight for the cause," said Wilkie.

Donations can be mailed to the HBMA 177B Springville Rd., Hampton Bays, NY 11946. Make checks payable to: The Patrick Kelly Fund.

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