Kidney Camp: A Magical Place Where Disease Vanishes And Insecurities Fade

Blog Kidney Camp Brookston In Riley 12 0605 Md

The scars on their bodies. Here, in this wooded place, they are OK. The ostomy bags and catheters, the blood pressure cuffs and the dialysis machines, those are OK, too. There are no stares or judgmental glances. There are no probing questions. This is Kidney Camp, such a simple, unpretentious name. Such a beautiful name, really, when you find out what happens here.

Spring break was the big date for Keke Shearer’s second kidney transplant

It would be a surgery to unlock freedom for the 14-year-old girl.

No more dialysis. No medical schedule to be tied to. A new, healthy kidney inside her body.

But when Keke started really thinking about that transplant, and looking at the calendar and doing the math?

“I started bawling,” Keke said this week. 

Crying not because she was scared to have the surgery. Keke’s life has been one of hospitals and medical treatments. She already had one kidney transplant at age 5.

No, Keke was crying because the recovery from a transplant surgery – had she had it in the spring – would have meant missing out on  Kidney Camp.

And so… Keke’s transplant has been rescheduled for next year at Riley Hospital for Children at IU Health.

And Keke was at her fifth Kidney Camp on Tuesday, beaming.

She loves the candle making and the zip lining, but most of all Keke loves not wondering if there will be whispers or stares.  

“I just like being with people that have the same things as me, getting to hear their stories,” says Keke, of Fort Wayne. “Getting to be with people that understand you is great. People at school, they don’t get you as much.”

Yes. This camp, in its 14th year and put on by the National Kidney Foundation of Indiana, is a magical place for its 35 attendees, kids ages 8 to 18 with kidney disease.

At this camp – nestled inside Camp Tecumseh in Brookston, Ind. -- dialysis machines, catheters, blood pressure cuffs, ostomy bags, all the medical equipment doesn’t matter. The scars from surgeries don’t matter, either.

“These kids, they get once a year where they get to come together to be with kids just like them,” says Margie Evans Fort, CEO of the National Kidney Foundation of Indiana. “And they get to not feel different. They get to know that everybody here understands what they are going through and then they can have a good time.” 

And they do have a good time. They have a wonderful time.

As the 5-day camp wrapped up this week -- one that has been filled with swimming and games and archery and art -- many campers were pleading to stay longer.

They didn’t want to go home. Camp, in many ways, felt like a home to them.

“I like to be able to hang out with people that get me,” says Kaylee Rasnake, 16, whose favorite activity at camp is the horseback riding. “They understand what we are going through.”

She also says the camp is a perfect place to meet friends and learn about other types of kidney diseases. Kaylee had a transplant in 2014.

For kids who don’t have kidney disease, Kaylee would like them to know something important.

“Don’t judge a book by its cover,” she says. “There is a lot more you can’t see from the outside of a person.”  

“Everybody has their own struggle,” Keke adds. 

“Everyone has their own story,” says Suzie Hedrick.

Hedrick is a co-founder of Kidney Camp, a diehard and loyal camp volunteer and a registered nurse who works in dialysis at Riley. 

Kidney camp is staffed with people like Hedrick and dozens of other volunteers and counselors, many from the nephrology department at Riley. There are physicians and nurses, pharmacists and nurse practitioners.

After all, most of these kids need intense medical care and wouldn’t be able to go to a typical summer camp, says Amy Wilson, M.D., pediatric nephrologist at Riley and a Kidney Camp doctor.

Ten of the nearly 35 kids at the camp were on dialysis. The others have medications to take.

“Many of their parents are terrified to send them to a regular camp,” Dr. Wilson says. “But they are so grateful to send them here to a camp where the people -- who have taken their kids through the hardest times of their lives -- are here with them.”

Getting to watch the kids thrive and smile and forget about – even for a hour or two – their disease is so wonderful, Dr. Wilson says.

“That,” says Hedrick, “is why this camp is so special to them.”

For more information on the National Kidney Foundation of Indiana, click here.

-- By Dana Benbow, Senior Journalist at IU Health.
   Reach Benbow via email or on Twitter @danabenbow.

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