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Health In Action Blog
My sixteenth birthday was unlike many other sweet sixteen celebrations. Instead of presents and gifts, I asked my friends and family to offer their support to children with skin diseases.
At age 11, I had been diagnosed with pemphigus foliaceous, a serious, potentially fatal skin disease. I received treatment at several university hospitals in my home-state of California where I met other children with chronic skin illnesses. We quickly bonded and through our shared friendships and struggles, I realized a need for an organization that focused on the unique problems of children and teenagers who suffer from serious skin diseases. With the generous support of my friends and family on my birthday, the Children’s Skin Disease Foundation (CSDF) was formed soon after.
Today, the CSDF continues to help children with skin diseases, especially through Camp Wonder—a week-long summer escape for children with skin diseases to play outside and just be kids without harsh stares or bullies. Camp Wonder, which has hosted 12 successful years of summer camp, remains one of my proudest accomplishments. My wonderful memories from my work with Camp Wonder highlight how important it is for children to have a place where they feel comfortable and can experience joy!
One of my most powerful Camp Wonder memories comes from the camp’s second year. I was playing the game Connect Four in the dining hall with a new camper named Max*. Max was a twelve-year old with Epidermolysis Bullosa, a disease that causes the skin to be fragile and easily injured, which can result in painful blisters. As a new camper he was shy. So, I tried to get to know him by asking child-friendly questions.
“What’s your favorite movie?”
"What’s your favorite food?”
“What’s your favorite color?”
“Green, because of my favorite Power Ranger.”
But, he really started to open up when I asked, “What do you want to be when you grow up?”
He looked down and said, “It doesn’t matter. Look at me. I’ll never amount to anything.”
That moment will forever be etched in my mind as the moment I knew the Children’s Skin Disease Foundation and Camp Wonder needed to do more to empower children with skin diseases to be themselves.
Skin diseases can’t be hidden and therefore, these children are forced to endure harsh comments that demoralize and diminish their self-esteem. Underneath the wounds, bandages, creams and scars, they are just normal kids with hopes and dreams.
Growing up and throughout my illness, I was fortunate to have an amazing support system. My parents have always been incredibly encouraging. And, the rest of my big, loud, Italian family—aunts, uncles and cousins—have been equally uplifting.
Sadly, not all children have this type of support system and it becomes especially necessary when dealing with a severe chronic illness. Camp Wonder offers them a place to follow their dreams and be themselves.
Another wonderful Camp Wonder memory involves the joy of dance! Anna*, a thirteen-year old girl with Ichthyosis, a disease characterized by body-wide scaly skin, loved dancing. She dreamed of being a flawless ballerina with sparkly costumes and lace-up ballet slippers like she saw in the movies.
She took dance lessons, but her mother told us she refused to perform because she was self-conscious about her skin. She was so ashamed that she only wore long-sleeved shirts and long pants in public to cover her skin. On her first day of Camp Wonder she continued to wear her long clothes despite the hot temperature. But, gradually, over the course of the week, she began to wear lighter clothes, a short-sleeved shirt and even shorts that she generally reserved for the privacy of her house.
We were pleasantly surprised when, with the encouragement of her counselors and fellow campers, she decided to enter the talent show. When she got up on stage she was wearing a two-piece sparkly, seafoam green costume and danced proudly with a huge smile on her face and tons of confidence! After her performance, I went up to congratulate her and told her how much I liked her costume! She said that she had it for years, but never felt comfortable wearing it until now. A few months later, her mom called to let us know that Anna had joined a professional dance group and was now participating in performances. Each of the following five years that Anna came to camp, she happily danced in the talent show.
Inspirational stories of children like Max and Anna always bring a smile to my face and remind me how important Camp Wonder is in the lives of these kids. Camp Wonder is a support system consisting of compassionate counselors and fellow campers who are there for each other in good times and bad.
The generous support of Cetaphil and CVS/pharmacy helps Camp Wonder provide kids with the opportunity to experience the joy of summer camp in a safe and nurturing environment, gain confidence and be the best they can be!
A portion of the proceeds from every Cetaphil special-edition Moisturizing Cream available exclusively at CVS/pharmacy locations nationwide and online at cvs.com/campwonder will be donated to Camp Wonder.
*All names have been changed.
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