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Transplant profile: No restriction to this boy's life
Wednesday, June 18, 2008
Jared Burk plays at home with the family dog, Baldur.

About the only noticeable difference between Jared Burk and other 11-year-old kids is the foot-long scar across his belly.

"He's perfectly normal," his mother, Eileen Burk, says proudly. "Many of the people he goes to Scouts and school with don't know he has a transplant. He has no restrictions."

It's been that way almost from the day of his liver transplant, May 8, 1998, at Children's Hospital of Pittsburgh. The surgery corrected a rare genetic enzyme deficiency that affected his liver's ability to detoxify ammonia from the blood, which twice almost killed him.

Just 11 days after the surgery, Jared joined his family, who live in Washington Township, Westmoreland County, in celebrating his first birthday. Eileen and David Burk have photos of him still in the hospital, his incision stapled, eating cake and hugging everybody in sight. Five weeks after the transplant he and his family vacationed on the Outer Banks.

"It was miraculous," Mrs. Burk said.

But now it's really no big deal that he'll be participating in his fourth U.S. Transplant Games here in Pittsburgh July 11-16, competing in volleyball, badminton and a 5K race that's also open to the public. He's collected at least one medal every time he competed. One year, he got a gold, a silver and a bronze, and other participants took to calling him The Rainbow Kid.

"I think in many ways Jared is typical of the far majority of kids [who are living good quality lives with liver transplants]," said Dr. George Mazariegos, who did Jared's transplant and now serves as director of pediatric transplantation in the Hillman Center for Pediatric Transplantation at Children's.

"And we're so excited he's in the games just to highlight that. He is a great example of how kids are doing so well and getting back to normal life, more routinely than ever before."

At Children's, Dr. Mazariegos said, "well over 90 percent" of liver transplant patients have reached 10-year survival and many of them have gone beyond. An early patient, he said, "is 27 years out after transplant and off drugs with normal liver function. We have kids who have become moms; several of our patients have healthy children."

The surgeon said "a combination" of improved surgical techniques and immunosuppresant, or anti-rejection, drugs, has contributed to the impressive survival rate. So does the fact, he said, that Children's patients are monitored yearly long after transplantation.

Still, Jared is "more emblematic of how good patients are doing throughout the program. In terms of [drugs] he's among the best," Dr. Mazariegos added.

"He's on so low a dose [of immunosuppresants] that it's not even measurable," Mrs. Burk said. And with good reason: "He has never rejected ... and they're always trying to find out why him."

To that end, the family has allowed Jared to take part in several research trials. "There have been extra tubes of blood, swabs for DNA ... and this summer they'll try to wean him off [the drugs completely]," Mrs. Burk said.

During and in between, Jared will continue to live like any other rising sixth-grader.

"I like to play with my Nintendo -- I just got it last winter," Jared said. "I like to rock collect, and I'm also in Boy Scouts, and I also like to play with my dog."

Baldur, a 11/2-year-old black Labrador retriever, "runs him ragged," Jared's mother said. "The dog is his personal trainer."

Jared also has a cat named Zeus and fish.

Coincidentally, Jared has two aunts by marriage who also are transplant recipients. Mrs. Burk's sister-in-law Tracy Minnear got a kidney donated by an aunt-in-law, Nancy Brown. And Mrs. Burk's aunt-in-law, Toni Ott, underwent a lung transplant. Like Jared, all three of them are members of Team Pittsburgh and will participate in the Transplant Games.

"It's a family affair," Jared said.

Pohla Smith can be reached at psmith@post-gazette.com or 412-263-1228.
First published on June 18, 2008 at 12:00 am
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