For a week, kids with renal disease get to act like other kids

For a week, kids with renal disease get to act like other kids
By Jessica Belasco- Express-News
Web Posted: 07/02/2010 12:00 CDT

BOSQUE COUNTY — It's not the typical summer camp activity.

"Kidney for 400," says the leader of Kidney Jeopardy. " ‘If you can't pee, what's another way to get the urine out?' "

"Catheter," answers the camper who hit her buzzer first.

"Transplant for 400: ‘What is a living donor?' "

"Someone who donates their kidney while they're still alive," says another girl triumphantly.

Outside the Silo building at Camp Reynal, other kids are busy with more traditional camp fun — fishing, swimming, volleyball, archery. But most would know the answers to the "Jeopardy"-style questions. Each of the 90 campers attending the National Kidney Foundation's Camp Reynal has kidney or urological disease.

The camp gives the kids, ages 8 to 16, a chance to enjoy the summer camp experience while accommodating their medical needs.

Camp Reynal, which has been around for 18 years, is one of several weeklong camps held at Camp John Marc, a 170-acre facility for chronically ill and physically challenged children about 50 miles northwest of Waco.

"I just have a blast. I look forward to it all year," says Kirson Barnes, 14, a freshman at Madison High School in San Antonio. "I love volleyball, riding horses and swimming. I hate to leave."

Barnes, who was born with a congenital defect of the urethra that impairs proper kidney functioning, began attending the camp when he was 7. He undergoes hemodialysis — which means being hooked up to a machine for as long as four hours — three days a week to clean his blood and remove excess water.

Camp Reynal is equipped with 11 hemodialysis machines, decorated with SpongeBob SquarePants images. Some campers undergo peritoneal dialysis in their cabins at night as they sleep, hooked to a machine next to their beds.

"For the kids on dialysis, if this didn't exist, they would not be able to go to camp," says Raymond Cavazos, a registered nurse and clinical coordinator for the Christus Santa Rosa Children's Kidney Center, who volunteers at the camp.

The staff tries to keep the kids entertained during the tedious process of dialysis. Dr. Ray Quigley, a pediatric nephrologist at Children's Medical Center in Dallas and the camp's medical director, likes to play his fiddle or juggle.

Several of the campers who have had kidney transplants no longer need dialysis but must take immunosuppressive medications. Many campers take blood pressure medication and other drugs. Some receive shots of growth hormone because their disease retards their growth.

Nine-year-old Yesenia Lozano downs multiple pills every day, but she's brimming with energy for her favorite activities.

"I learned how to swim," she says. "And I like the fishing."

Christus Santa Rosa Children's Hospital in San Antonio, Cook Children's Medical Center of Fort Worth and Children's Medical Center in Dallas provide medical staff, supplies and medication for Camp Reynal.

The foundation relies on grants and donations to fund the camp — which had a budget this year of about $93,000 — so it's free to the kids.

Campers eat a special kidney-friendly diet low in salt, potassium, phosphorus and protein. They can also take cooking classes to learn how to prepare healthy foods.

Camp staff works to make sure the kids can enjoy regular activities. Kids have their dialysis ports covered so they can swim, for example.

"Normally they're told ‘No, no, no. You can't do that. You can't eat that. You can't go out and play sports because you'll get tired,'?" says Jennifer Luther, 18, a camp counselor. "When you walk through that gate (into Camp Reynal), you're free. Everyone forgets what they have."

What really makes the camp special, though, is that the campers are around other kids going through the same thing.

"I see this place as apart from the real world," says Steve Schiffmacher, 21, a San Antonio College sophomore who spent 11 years as a camper and is now a counselor.

"We're not scared of each other's illnesses. We're not afraid to show our scars or go swimming with our shirts off. When you dialysize, your veins get big and you get bumps on your arms. That's another thing kids aren't afraid to show."

Kids aren't the only ones who benefit from the camp. It gives families a break from caring for a child with a chronic illness, says Connie Sanchez, Kirson Barnes's mother.

"The week that he was gone, all I could think was, ‘Oh my gosh, today's Monday, and I do not have to get up at 5:30 in the morning to take him to dialysis.' I'm not always having to worry about his medications," Sanchez says. "It leaves your mind stress-free for a week."

Camp Reynal is held at Camp John Marc every summer. For more information on the camp, go to www.kidney.org or call (877) 543-6397.

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