Call it Camp Wonder

14 year old Brandi Coil tipped her sunglasses back on her dark brown hair.  She sat in the shade as whoops of excitement erupted from the grassy field nearby.  Her arms and legs were covered by bandages but she smiled broadly and talked excitedly.  “You’re just not paying attention to your wounds and stuff and how sore you are.  You’re just having a great time, you just forget about it, everybody does.”

Brandi has Recessive Dystrophic Epidermolysis Bullosa, known as EB, a rare and severe skin disorder that curls her hands and feet, and causes severe, painful blistering of the skin.  She has to keep her skin covered she says, “to keep flies off it, and protect my open sores.” 

We are relaxing at Camp Wonder near Livermore, California, where on this day 21 of the 80 campers have EB, and all have some kind of severe skin disorder.  Camp Wonder is run by the non-profit Children’s Skin Disease Foundation, which has provided air fare, accommodations and activities for campers from around the United States.  “When we’re in public, people just stare, all you get are stares,” said Brandi, “and it”s really uncomfortable.  Here you don’t get stares.”

16-year old Joseph Pedsmer of Long Island, New York, his voice raspy from cheering on his relay team, said “It’s that we share that common bond that makes us work so well together.”  Joseph’s throat, chin and bare arms are red and scarred from a severe form of eczema.  “This is just one week of fifty-two in the year,” Joseph said, “that these kids get to live away from stares and judgement.”

The nine-year old camp was the brainchild of then-16 year old Francesca Tenconi, of Walnut Creek, California.  She had a painful and disfiguring skin disorder called Pemphigus Foliaceous, and spoke to Drs. Jenny Kim and Stefani Takahashi of UCLA Medical School about her idea.  “It’s a great way to get everyone together for a week and give these kids a sense of normalcy,” said Tenconi, who’s now about to enter medical school herself to pursue a career as a pediatric dermatologist.  Her disease was successfully treated and she now is free of the physical scarring, but the emotional pain stayed with her.  “It’s not something even many doctors understand.”

Spending a week with the campers, swimming, playing ball, riding horseback, rope climbing and hiking, as well as taking care of their medical needs, is an instructive introduction to dermatology for medical student 29 year old Bridgit Hartman, a camp volunteer.  “I think it’s easy to forget how much many of these kids are dealing with emotionally, every single day,” said Hartman who also acknowledged, “This has been a hard week.”

“This makes us better doctors, nurses and people, really,” said 45-year old dermatologist Jenny Kim, who’s been here every day of every camp session since the beginning.  “These young people are so strong, so happy and so beautiful in their ways,” said Kim as she led me into the camp’s “Med Shed” to meet 6 year old Zach Troop.  Zach and his mother, Kadee, are from Bountiful, Utah.  It is Zach’s first camp. 

“It’s great!” Zach grinned as his mother wrapped a bandage on open wounds on his left foot.  Zach also has EB.  Bandages fleck his shoulders and knees as well.  His wounds will likely spread and damage more and more of his skin.  There is no cure.  But there is Camp Wonder.

Follow me on Twitter @JohnFowlerTV

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