Lizie Fernandez, 10, left, of Texas practices for the talent show with her friends Natasha Starkey, 9, right, of Ohio and Brandi Coil, 10, of Grass Valley at Camp Wonder in Livermore on Tuesday. The three of them, who live with epidermolysis bullosa, named their band the Super Duper Models and sang the song

Published in the Contra Costa Times - Sunday, June 26, 2005 on the front page and full pages 10 & 11

By Sandy Kleffman of the Contra Costa Times

Natasha and Lizie undergo their own dressing changes while they sing. With sores and blisters covering much of their bodies, they have become pros at the painful procedure, accepting it with grace and good cheer. Such are the incongruities of Camp Wonder , the only camp in the western United States for children with chronic and often disfiguring skin diseases.

Seventy-four boys and girls gathered at the Livermore camp last week. Away from the stares of strangers, they swam, rode horses, climbed a rock wall, slept in bunk beds and devised crazy skits. As much as possible, for five days, they left their diseases behind. "The main thing I wanted to do is give the kids a sense of self-respect and let them know there are people who will accept them,"said camp founder Francesca Tenconi. "Many of these kids are very ill, and there's always a question about who will come back next year."

Alex Coil, 11, who lives with epidermolysis bullosa, known as EB, takes a sip from a vanilla shake with help from Betsy Gardner, a third-year medical student from Touro University, while bathing and watching the movie Harriet the Spy at Camp Wonder in Livermore on Tuesday. Alex just finished swimming and is taking the bath in preparation for redressing his skin. EB is a rare genetic skin disorder that causes breakdown and blistering of the skin. Alex has the disease on his whole body.

Tucked in the tree-studded foothills south of Wente Vineyards, the camp is supported by the Taylor Family Foundation. Eleven-year-old Alex Coil spent a sunny afternoon last week in the pool, sporting swimming trunks over his bandages. "This is my favorite place in the world here at camp," the freckled boy said with a smile. The Grass Valley resident arrived at the camp with his 10-year-old sister, Brandi. The siblings have a genetic condition known as epidermolysis bullosa, or EB. Lizie and Natasha also have the disease.

Counselors and campers draw a crowd as they prepare to film a scene of a commercial at Camp Wonder in Livermore on Tuesday. The commercial was one of many different activities the campers participated in during the day.

Structural weaknesses in the children's skin cause deep sores and scarring. The skin is so fragile that slight friction will make it blister or slough off. The scarring is often so severe that fingers fuse to the palm, permanently shaping the hand into a fist. The webbing can also affect the feet, causing toes to curl into the skin. Although 16 children with epidermolysis bullosa attended Camp Wonder last week, the condition is rare. Depending on the type of EB involved, it strikes one in 20,000 children, or one in 50,000. Walking can be painful for EB sufferers, so many use wheelchairs.

Swimming is therapeutic. The chlorine keeps the sores clean and the soaking makes it easier to pull bandages off for a dressing change. Yet, many EB patients find it difficult to use public pools at home. Some have been grilled about their condition or asked to leave by people worried that the disease is contagious. It is not. There are no such concerns at Camp Wonder, where everyone is accepted and welcomed. "I'm heavier than anything," Alex says as he steps out of the pool, his sopping bandages and a life vest weighing him down. He begins a slow, halting shuffle to his wheelchair, displaying his wry humor. "I'm a penguin," he says of his stiff movements. "Where's my limo?" The camp has a "Club Med" where the children go for bandaging. Most EB patients have their dressings changed every other day, a two- to three-hour task.

Counselor Hannah Kauffman, right, walks with camper Autumn Sproul, 11, at Camp Wonder. About 75 children with diseases that include epidermolysis bullosa, ichthyosis, eczema, pemphigus and psoriasis participate in the camp.

The campers have a variety of diseases, some common and some very rare, including psoriasis, eczema, ichthyosis, vitiligo, nevoid basal cell carcinoma syndrome and pemphigus. "You don't see the whole picture of what skin disease is like when you just see kids in your office," said Stanford dermatologist Dr. Anna Bruckner. She treats Alex, Brandi and their older brother, Corey, who

Lizie Fernandez has emu oil applied to her skin by her mother, Jenny, at Camp Wonder.

Bruckner took advantage of her time at the camp to help with Alex's dressing change. He first soaked in a tub while enjoying a vanilla milkshake and a movie. "It was just nice to be able to spend some time with Alex," she said. "He's really good at air hockey. It's fun to see the kids being kids." The volunteers try to minimize the focus on disease and make Camp Wonder about singing, dancing, arts and crafts and just having fun.

The camp has one paid staff member: director Barry Vigon, a big man with a booming voice who has worked as a comedy writer for such shows as "The Facts of Life," "Roseanne" and "Who's the Boss." "I bring my comedy to camp," he said. "I get silly with them, and they love it. They give me so much more than I give them. They are so appreciative. "For many of these kids who may not live long or have been suffering, this becomes the highlight of their year. Something happens as soon as they step on the property -- the bonding, the smiles, the experience of independence."

The camp turned away 17 children this year after reaching capacity. Tenconi admits those with the severest conditions first, the ones she figures may not have many summers left. "Honestly, most camps just would not accept them because of their medical regimens," she said. For some children with rare conditions, the camp provides the first time they meet others who have their disease. "Some kids don't get to socialize like normal children do," said Pat McClelland, a UCSF nurse who has volunteered at Camp Wonder from the beginning. "They don't have many friends except their families."

Sarah Bannon, 10, of Des Moines, Iowa, left, Kayla Pelman, 13, of New Orleans and Julia Miller of Billings, Mont., tangle themselves up while playing in the pool at Camp Wonder. Sarah has the skin disease ichthyosis, Kayla has basal cell carcinoma nevus syndrome and Julia has psoriasis, which causes skin cells to grow too quickly, resulting in thick patches.

Some have such visible signs of their maladies that they frequently draw stares in public. One girl told Vigon she cannot go through a day without getting teased or made to feel uncomfortable. "When she comes to this camp, she can let her defenses down," he said. "Here they are in a completely relaxed environment. They share their stories and support each other." During the day, the camp talk centers on typical kid stuff -- music, movies, the activities at hand. But at night, when tucked safely in their beds, the kids often share information about medications and how they cope with their diseases.

Tenconi calls skin disease an "orphan field." Most of the conditions are so rare that pharmaceutical companies refrain from funding research on treatments, figuring they can make more money elsewhere. Tenconi spends much of the year raising money to support the camp. She formed the Children's Skin Disease Foundation, a nonprofit organization to fund Camp Wonder and other programs. The camp is free for the children. "A lot of these families are burdened with huge medical expenses," she said. "I just did not want finances to be a factor in choosing who comes."

Few children seemed to form a closer bond last week than Lizie and Natasha, who first met at an EB conference several years ago.

Mark Delmege, 13, is helped down from a rock-climbing wall at Camp Wonder in Livermore on Tuesday. Mark started going up the wall with some help from the belayer but had to come back down because the harness was hurting too badly. Mark has epidermolysis bullosa.

Lizie's mom stayed at the camp and handled her dressing changes. Natasha's mom sent along a box of dressings with detailed instructions for the volunteer nurses. When it came time to have their dressings changed, the two girls asked to be side-by-side to keep each other company. They sang songs and shared stories, ignoring the screams from behind the curtain. A group of four nurses gathered around Natasha, following her mother's instructions. They removed the outer bandages, but when it came to the ones closest to her skin, Natasha slowly peeled them off herself, revealing the raw skin. "Ouch, ouch," she said several times before asking for pain medication.

Kayla Pelman, 13, of New Orleans, left, and Jacey Childs, 13, of La Grande, Ore., enjoy themselves in the pool at Camp Wonder on Tuesday. Kayla lives with basal cell carcinoma nevus syndrome, which causes the development of cancerous cysts and lesions, and Jacey has ichthyosis, which causes an accumulation of dead skin cells.

Reach staff writer Sandy Kleffman at 925-943-8249 or This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
Reproduction of this feature article covering the Children's Skin Disease Foundation/Camp Wonder is for charity information only
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