In the book typecast, Andrew Deutscher profiles everyday heroes in the T1 community. In this excerpt, he introduces us to Tom Karlya, a diabetes dad who has made it his mission to raise money for the Diabetes Research Institute.
Of all the roles that actor Tom Karlya has played, it is his undertaking as a diabetes dad that will end up earning him some kind of lifetime achievement award.
In the eighties and nineties, Tom was just another working actor and family man, busy building a successful career. A regular in the theatrical smash hit “Tony n’ Tina’s Wedding,” he also appeared on “NYPD Blue,” “Law & Order,” and “The Cosby Show.” Then on Sept. 26, 1992, Tom’s 2-year-old daughter, Kaitlyn, was rushed to the hospital. He received a frantic call from his wife, Jill.
Two hours later, Tom sat down next to his little girl in the hospital. Kaitlyn was gray and all cried out. He pushed her hair away from her eyes, and she noticed all the wires and machines attached to her.
“Daddy?”
“What is it, honey?”
“Fix.”
At that moment, Tom says he made a commitment to find a cure:
“At Kaitlyn’s crib in the hospital…I made up my mind that I would not bow to this disease and I would not let anyone who comes in contact with her bow to it, either,” Tom said.
Diabetes became the new normal for the Karlya family, but the surprises didn’t end that day in the hospital. Siblings of children with T1 have roughly a 1% greater risk of a diabetes diagnosis than the average person; for the Karlyas, that 1% turned out to be high enough. In 2009, Tom’s son, Rob, came up to him and said he had been peeing a lot.
“What’s a lot?” asked Tom.
“Four times an hour.”
“Since when?”
“Um, since yesterday,” Rob answered. “That’s diabetes, isn’t it?”
Tom told his son to have Kaitlyn, now an adult, check his blood sugar. She came downstairs with the meter hanging limply in her hand; it just read “high”. With another trip to the emergency room, the Karlyas had to relearn everything they knew about caring for a child with diabetes. On the bright side, Rob already had the support of his sister, and the family was already acclimated to managing diabetes. But there was no mistaking the toll a double diagnosis can take on a family.
“It’s just emotionally taxing,” Tom says. “It’s everything times two. There are double reminders everywhere: daily management times two, a full closet of diabetes supplies instead of a half, two school nurses…the list goes on.”
By then, Tom’s personal and professional life revolved around diabetes. He says Kaitlyn’s diagnosis gave him a sense of purpose that was deeper than anything he had felt in acting. It galvanized him to push for a cure, and he used his show business acumen to do it. He tapped producer Phil Rosenthal, of “Everybody Loves Raymond,” to help him coordinate the filming of public service announcements with actor Ray Romano. He also spent time working on CNBC’s “DLife,” which featured stories, recipes, and diabetes education. Tom’s work on the show earned him an Emmy nomination.
Tom moved on to raise millions of dollars for the Diabetes Research Institute (DRI) at the University of Miami School of Medicine. As vice president of the institute’s foundation, he serves as a key liaison for the DRI Diabetes Diplomats fundraising program. These “Diabetes Diplomats” are people who find fun, simple, and creative ways to raise money and to be a part of the drive for a cure. Tom also works with the Building Construction Trades Department of the AFL-CIO to coordinate fundraising efforts that have raised tens of millions of dollars for the institute. With the AFL-CIO, Tom assists or manages 75 different events around the country. His schedule is daunting, but he shrugs off the idea of slowing down.
“When my kids get a break, so will I. Not one second before,” he says. “If they can keep at it, and they do, my work is a piece of cake compared to what they have to deal with…They can never stop thinking about it. I have to try to match that as much as I can.”
To read the complete profile of Tom Karlya and other stories of T1 heroism, order typecast at https://secure.mybookorders.com/Orderpage/1226. You can also read more from Tom on his blog, “Diabetes Dad”.
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