When Jared Burk heads to Disney World in Orlando, Fla., later this month, he'll be as much a celebrity as the world's most famous mouse.
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| Jared Burk lets one fly at the bowling alley. That's his dad, David Burk, with him. (Gabor Degre, Post-Gazette) |
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The 5-year-old from Washington Township will be one of the youngest delegates participating in the 2002 U.S. Transplant Games at Disney's Wide World of Sports complex. Some 3,200 heart, lung, kidney, pancreas and liver recipients from across the country, including 46 from the Pittsburgh area, will participate. The games are held every two years.
Jared, who will bowl in the competition, received a new liver when he was 7 months old. At the time, he was suffering from a genetic metabolic disorder that diet, medication and other treatments could not control.
Other athletes will vie in track and field events, cycling, swimming, golf, basketball, volleyball and tennis.
"These people have all come so close to death there was probably a time when they couldn't walk from room to room," said Bonnie Gorman, executive director of the Western Pennsylvania affiliate of the National Kidney Foundation, which is hosting the Olympics. "And now they're leading active, normal lives.
"The purpose of the games is to raise transplant awareness, to get people to sign organ donor cards."
The eldest participant from the Pittsburgh area is Linda Stocke, 65, of Pitcairn, a lung recipient. Her son, Matt Stocke, now appearing on Broadway in "The Full Monty," helped raise $5,200 toward the games and will perform in closing ceremonies.
Actor Larry Hagman, who played J.R. Ewing on the "Dallas" television series in the 1980s and received a liver transplant several years ago, also will attend, as will former NBA players Sean Elliott, who received a kidney from his brother in 1999 and returned to the game, and Oscar "Big O" Robertson, who donated a kidney to his daughter. She will participate, too.
Jared, remarkably, has two relatives who have also had transplants: an aunt through marriage, Tracy Minnear, 42, of Cresson, who received a kidney; and a grand aunt, Toni Ott, 62, of Penn Hills, who received a lung last year.
"I know, it's amazing, three different diseases, three different transplants," said Minnear, who is joining Jared at the games and also will be bowling. Ott is not attending.
Minnear has been bowling with Jared and his father, David, since January to prepare for the games.
Diagnosed in 1989 with an auto-immune disease called IgA nephropathy, Minnear had been on nightly dialysis for more than two years when her husband's aunt Nancy Brown of DuBois offered one of her kidneys.
"Not a day goes by that I don't think of Nancy," said Minnear.
When Jared's liver started to fail, his father was scheduled to donate a piece of his liver, but then a compatible organ became available when a baby his age died.
"We don't know who the family is, though we wrote to them anonymously through CORE [Center for Organ Recovery and Education]," said Jared's mother Eileen Burk, 42.
"I told them about Jared in the letter. How well he is doing. How the transplant has been a complete miracle. They haven't responded yet and maybe they never will," she said. "I understand they are having a hard time. But I want them to know what their gift has meant."
Jared and his father, who have joined a bowling league, also fish together at the family camp on the Allegheny River in East Brady.
"Unless Jared pulled up his shirt and showed you his scar, you'd think he's any other 5-year-old," Minnear said.
With the metabolic disease, he couldn't digest protein and other foods. Now his grandmother brags to the family about his appetite. "She calls to tell me about the big man's breakfast Jared eats," Eileen Burk said. "That's a joy because meat is something he'd never have been able to tolerate without the transplant."
While Minnear expects to take three organ anti-rejection pills a day for the rest of her life, Burk is being weaned from his medication as part of a national study his surgeon Dr. George Mazariegos of UPMC is helping to conduct.
Organ donor families who attend the Olympics will be acknowledged in a special ceremony.
While some organ tissue can be taken from living donors, including lungs, there is still an overwhelming need for organs from cadavers, said Judi Vensak, a UPMC transplant nurse and coordinator of Team Pittsburgh.
More than 79,000 Americans are on waiting lists for organs, and the number grows by 114 every day.
Lungs are the most fragile of solid organs because they depend so much upon blood and oxygen to be viable, Vensak said. Jared's grand-aunt Ott received a lung after suffering for years from emphysema and is progressing, although there have been complications.
Another participant on Team Pittsburgh is Michelle Murphy, 24, a New Hampshire woman born with cystic fibrosis, an incurable condition that's often fatal by adulthood. It causes abnormal secretions, particularly in the lungs, that clog airways. She received pieces of lung from her stepfather and a family friend at UPMC.
"She sent us a tape of herself skiing last winter which is incredible," Gorman said.
Murphy will take part in the 1500 meter walk at the Olympics.
"When you consider she has cystic fibrosis, that's pretty amazing," said Vensack. "The transplant did not cure her, but it certainly is prolonging her life."
While every transplant Olympian has received physician clearance to participate, said Vensak, plenty of medical support will be available at the games. "We talk to them about hydration and stretch training, but these athletes are not so different from anyone else."
The Burks and other families have done fund-raising for the Olympics but the games are being underwritten for the most part by Novartis Pharmaceuticals. It will cost about $60,000 to send Team Pittsburgh athletes to Florida.
For more information on organ donation, call the National Kidney Foundation of (800) 261-4115.
Deborah Weisberg is a free-lance writer who covers health issues.
Correction/Clarification: (Published June 12, 2002) Actor Larry Hagman did not have a liver transplant at UPMC Health System, as was incorrectly reported in a story yesterday about the U.S. Transplant Games. The story also misspelled the last name of researcher Dr. George Mazariegos.
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