Days of wonder

Glitter, therapy dogs, superhero capes, and prom dresses—seemingly strange bedfellows in the world of medicine and a gathering of approximately 60 children (ages 6 to 17) suffering from a range of skin diseases from epidermolysis bullosa to icthyosis. But this is how my first  day at Camp Wonder, in the beautiful foothills of northern California, went.

Children Skin Disease Foundation (CSDF) sponsors Camp Wonder, a medically-staffed camp in Livermore, CA, for children with severe chronic and/or fatal skin diseases. Camp Wonder is free to children dealing with skin diseases including pemphigus, alopecia, vitiligo, skin tumors, and skin cancer. GSK committed to a five-year endowment totaling $125,000 for Camp Wonder, but this year marks Stiefel’s seventh year of sending volunteers to Camp Wonder. Three of us, Michele LaRussa, Kathy Spencer, and I, were  honored to serve as corporate volunteers at camp.

All of our trepidations were thrown out as the first campers trickled in. Veteran campers, eyes bright with anticipation, screamed with delight at the sight of their camp buddies. Fist bumps and hugs were plentiful. First timers looked around, eyes wide and nervous about leaving their caregivers, likely for the first time in their lives. But, when a friendly counselor approached to show them their cabins, they can see they are about to experience one of the best weeks ever.

After that introduction, the days were something like this:

I look around. There is the young boy, about 10 years old, bandages on every limb, who is showing off his moonwalking moves. In the swimming pool I see a group of young girls splashing and dunking each other. In the dining hall, the kids are getting their nails painted with glitter and neon polish. “I want tattoos on my wrist, forearm, and both cheeks,” says a young boy as he rolls up his sleeve to adorn his arms with body art.

I look around some more. Those in wheelchairs aren’t left out. The wheelchairs don’t stop them from throwing frisbees in the meadows. This is a no-judgment zone. No stares from passers-by, no fellow students shirking away from the disfigurements that hide these lovely souls.

I close my eyes. Now all I hear are the squeals of laughter and screaming...just regular kids having a regular day at a special camp. 

I take a pause from the fun. I take a quick walk to the “med-shed” up the hill. The medical tent is perhaps the only glimpse into the reality of the graveness of their conditions. It is here that a dedicated group of volunteer physicians and nurses tend to bandages that need changing every few hours, moles that need tending to, wounds checked, and ointments slathered on.

Now, back to the fun. Momentarily forgetting their distressed skin, wheelchair confinements, and limbs too scarred and tender to hold weight, the young girls and boys are scouring the clothes racks. Prom night is coming up. “Which do you think looks better on me, the pink or the purple dress?” “Um, does this yellow tie match this shirt?” “Hey, mom, wish you could see me now, I am having a blast!”

Camp Wonder benefits from corporate sponsorship and community donations, but it is truly the labor of compassion of the volunteers who help create this safe and fun one week haven—from the counselors, majority of them who have graduated to role model status from being campers themselves, to the medics, and seamstresses making custom superhero capes for kids to wear during camp.

Jen Pham, the assistant director said “Camp Wonder is magic, love, and understanding, a life-changing experience for campers and volunteers alike.” Indeed. After all, this is where the superheroes are made.