Camp Arroyo helps kids with life-threatening diseases with life-changing experience

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ByCheryl Jennings KGO logo
Saturday, August 27, 2016
Camp Arroyo helps kids with life-threatening diseases with life-changing experience
The smiles prove the sheer joy of being at summer camp where these young people are celebrating their version of the Summer Olympics.

LIVERMORE, Calif. (KGO) -- The smiles prove the sheer joy of being at summer camp where these young people are celebrating their version of the Summer Olympics.

This is Camp Go Beyond, where they're holding their annual session at Camp Arroyo in Livermore, sponsored by the Taylor Family Foundation. ABC7 is a proud partner with the Taylor Family Foundation.

You'd never know that the campers and counselors live with potentially life-threatening intestinal illnesses, including irritable bowel disease, or IBD, such as colitis or Crohn's disease.

"When I was really sick, it was like fatigue, severe diarrhea and I just didn't feel good," explained Giovanni, one of the campers.

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"I got diagnosed when I was eight. I have Crohn's disease and it's a form of IBD. It's a lot of inflammation in your stomach and it can be hard to digest stuff," said Jade, also a camper.

Jade, 14, and her 12-year-old brother A.J. are both dealing with health issues. A.J. says he manages his illness with pills but insists it doesn't stop him from doing anything.

"We don't know what causes it. We do know that there are genes associated with inflammatory bowl disease. Some patients have family history. In younger children, about 40 per cent will have another family member who already had the disease," explained Dr. Mel Hayman.

Camp Go Beyond was founded by Dr. Hayman 16 years ago. He's the Division Chief of Pediatric Gastroenterology and Nutrition at Benioff Children's Hospital in San Francisco.

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"I have two nurse practitioners who have been with me the whole time, and between all of us, we really have run the camp and probably half the kids here are our patients," he said.

Dr. Hayman says some can manage their illnesses on medications and controlled diets, but others have to endure surgery.

"It's a broviac. It goes down here. It takes a pit stop in my heart and nutrition and protein and all the stuff you need goes through it, in a backpack, like an IV bag. I do that for 13 hours until I wake up in the morning," shared Giovanni.

"A little over a year ago, I had to have my colon removed after going through about six or seven different medications within six months. Now, I have what is called a J-pouch, which is formed out of my small intestine," explained Chayla Fisher, an 18-year-old counselor.

Kaylin, 21, is a camper, turned counselor, living with Crohn's disease. Her surgery means she temporarily lives with something called a stoma, on the outside of her abdomen.

"When I eat things, instead of going out one end, they go out another end to give the colon a rest from having to push food through," said Kaylin. "It's been pretty difficult, kind of finding a new normal. And with Crohn's I had to find a whole new normal."

Campers love the fact that they are not treated like sick kids here, especially because sometimes when they're at home, people make fun of them because of their disease.

"I was diagnosed with Crohn's disease, I had to rush to the restroom lots of times, and a few people, they started making fun of me, because I would always rush to the bathroom during class," shared one the campers.

"We try and put them through every activity we possibly can and then they quickly go to the med shed, take their medication, get patched up as necessary and get back to the business of being campers," said Richard Bernstein, the camp director.

The executive director of the Taylor Family Foundation says they make extra special accommodations for these campers.

"We cover 140 acres. So we put porta potties in, an extra dozen nearly throughout all of the campus, so no child is at risk of having an accident," explained Angie Carmignani, the executive director.

The experiences at Camp Go Beyond are often life-changing.

"Part of the reason I wanted to be a counselor was to be able to be that person in that kid's life, that's like, 'Oh my gosh, look at her and she went away to college and she did this and that. And if she can do it, I can do it too,'" said Kaylin.

The Taylor Family Foundation's annual fundraiser at Camp Arroyo is this Sunday, August 28. To learn more about the event or how to get involved, click here!