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Kids with transplants thrive at W.Va. camp

By Gail White

Monday, August 15, 2005

The Poland girl remembers very little about her operations at a young age.
POLAND -- Eight-year-old Kaylin Donnadio doesn't remember the name of the disease that attacked her liver when she was a baby.
"It was brown and bumpy," she said, describing the organ.
The cause of biliary atresia, a disease that attacks one out of every 15,000 young infants, is unknown. It is an obstruction in the ducts that carry bile from the liver to the intestines. The blockage causes cirrhosis of the liver.
Kaylin also doesn't remember the operation she had at 6 weeks old, when doctors opened the ducts in her liver to allow the bile to flow through.
"It was a temporary fix," Kaylin's mother, Sabrina, explained. Kaylin was placed on a liver transplant waiting list.
On New Year's Eve 1998, when Kaylin was 11/2 years old, her brown and bumpy liver was replaced with a healthy pink one.
She doesn't remember that operation either, but the scar that runs from one end of her belly to the other is proof of her past.
What Kaylin does remember, and will likely never forget, is the four days she spent at Camp Chihopi, Aug. 5-8, on Cheat Lake near Morgantown, W.Va.
Support structure
Camp Chihopi was created by the Children's Liver and Intestine Transplant Team from Children's Hospital of Pittsburgh for children who have received organ transplants.
"Camp allows these kids, all of whom have been through numerous challenging medical and emotional experiences, to come together with other children who have similar histories in a fun setting," said Dr. George V. Mazariegos, the camp's medical director and director of pediatric transplantation at the Pittsburgh hospital.
"For much of their lives, especially when they are young, our patients may feel different from their peers because of their unique medical conditions. Coming to camp helps to develop a sense of identity and acceptance," Dr. Mazariegos said,
Sitting on the couch in her living room at home, Kaylin pushes her long blonde hair behind her ear as she describes her time at camp. "We went swimming in a pool and a lake," she said. "I liked the lake better because we got to go tubing. We went real fast."
Horseback riding, mountain biking and crafts were all a part of her camp experience.
"I made a birdhouse," Kaylin said. However, her little sister, Haley, liked her sister's creation a little too much -- it broke. Kaylin shakes her head and says, "Terrible 2's."
One of the highlights of camp was red carpet night. Campers were encouraged to dress up like their favorite stars.
"We packed a dress and jewelry," Sabrina said. "Kaylin's a bit of a tomboy, and she decided she didn't want to do that."
Kaylin walked down the red carpet as herself.
Fortunate circumstances
Tending to the medical needs of the campers was a routine part of camp.
"Everybody had to wake up real early to take their medicine," Kaylin said. "But I got to sleep in. They said I was lucky."
Indeed, Kaylin is very lucky.
"They told me she would have to take anti-rejection drugs for the rest of her life," Sabrina said.
Kaylin has been off her anti-rejection medication for six months.
Talking with some of the parents whose children were at camp, Sabrina heard stories of complications and trouble with medicines.
"It really reinforced how lucky we are," Sabrina said with thankfulness in her voice.
"You would never know to look at her," Sabrina said, noting that Kaylin plays baseball and basketball and does gymnastics.
In fact, except for the scar across her belly, there is really only one thing that reminds Kaylin of her brown and bumpy liver.
"I can't play football," the 8-year-old said with a frown.