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The Mercury News: "One Week Of Normalcy"

LIVERMORE — For much of his 23 years, Mark Delmege has heard the whispers and seen the stares. His arms and legs are constantly scabbed and bandaged, the result of an extremely rare skin disorder called epidermolysis bullosa, or EB, which causes his skin to flake and fall off. Even the slightest touch can cause severe tearing or blistering.

But every summer, at a quiet, secluded camp in Livermore’s wine country, Delmege can get away for a while and be with others with similar disorders — others who understand.

“It’s just one week of living normal,” Delmege said. “There’s no staring, no rude comments, it’s just an escape. It makes you feel like you’re not the only one.”

Delmege, who lives in San Diego and is now a camp counselor, has been coming to Camp Wonder since it opened in 2001. For nearly 80 children ages 6 to 16 who have chronic, life-threatening skin diseases, the camp is their only opportunity all year to swim, ride horses, learn to dance, go to prom, play games and, most important, just be kids.

The camp is the brainchild of Francesca Tenconi, founder of the Children’s Skin Disease Foundation. Born and raised in Walnut Creek, Tenconi at age 11 was diagnosed with a rare skin disease called pemphigus foliaceus, an autoimmune illness that causes her skin to blister and scale. For the competitive swimmer, the news was devastating.

“Skin disease is so visual; you can’t hide from it,” Tenconi said. “I really had to learn pretty quickly what reality was, of what people would say or what people would think of me.”

Years of treatment followed, and for her Sweet 16 birthday, Tenconi asked for donations to help start the nonprofit. In 2000, along with Southern California doctors Jenny Kim of UCLA and Stefani Takahashi of USC, she hatched the idea for a sanctuary.

“The goal is to give the kids a week of no staring, no asking, ‘Is that contagious?’ Giving them that week of just being themselves we hope translates into their lives, and they have more self-esteem and more confidence,” Tenconi said. “Everybody has to be part of a community, and this is our community. It’s home. It’s a safe haven.”

This year’s camp, which wrapped up Saturday, marked Camp Wonder’s 15th anniversary. It was the second experience for Allison Davis, a 13-year-old from Atlanta with Netherton syndrome, which causes her skin to scale and fall off and is found in only 1 in 200,000 newborns. Davis’ highlights for the week were zip-lining, rock climbing and meeting Laura Marano, star of Disney’s “Austin & Ally” show.

“It’s amazing because they know what I go through, and I know what they go through sometimes,” she said.

The connections the campers make don’t end when camp is over. Rebecca Rhodes, an 18-year-old camp counselor from Atlanta, has Olmstead syndrome, which causes severe callouses on her hands and feet and makes walking difficult. In her fifth year at camp, Rhodes said she’s made lifelong friends, a lifetime of memories and had her eyes opened.

“Before I came to camp, I didn’t stand up for myself,” Rhodes said. “I used to be very self-conscious; I hated being in public. Now, I’ll go everywhere. I realized I’m not alone, and there are people much worse off than I am.”

The camp is offered free through a grant from the Taylor Family Foundation — which hosts it at Camp Arroyo — private donations and funding from dermatology company Galderma. The company manufactures the brand Cetaphil, a line of skin care products that many campers must use on a daily basis.

Inside a bustling “Med Shed” full with ointments, creams and wraps, about 20 medical personnel handle the constant care and bandage dressing required for each camper, many of whom suffer from heat or sun sensitivity and fragile skin.

Doctors Takahashi and Kim head the station, bringing with them several of their respective schools’ resident physicians and med students. For the team, Takahashi said, the camp provides a better understanding of how to manage patients with disorders most physicians never encounter.

Parents say the camp has been a godsend. When their 10-year-old daughter, Emily, was diagnosed with EB, Stuart and Heather Houston of San Angelo, Texas, said doctors were clueless how to help. They reached out online and have connected with a community that gave them the answers they needed. While the couple stayed in Livermore, Emily spent her second year at camp. After the first time, Heather said, their daughter came back a completely different person.

“It was wonderful,” she said. “She was more independent when we got home; she wanted to do more things on her own. It was amazing. … They didn’t know us, but they shipped her out here and loved her.”

For Delmege, who has aspirations of going to trade school, the past 15 years at Camp Wonder have changed him, too.

“Life doesn’t wait for you to be sad,” he said. “You have to just keep going. … With skin conditions, it’s a little tough at times, but just being happy is the most important thing.”

WORLD OF WONDER To learn more about Camp Wonder and the Children’s Skin Disease Foundation visit



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