How an 11 year old girl helped change the face of childhood skin disease

Mankind has long been captivated by adventurers overcoming huge obstacles, be they oceans swum, deserts crossed or mountains climbed.  

 

But often it is the stories of people overcoming the challenges that life sometimes puts in our way that inspire us the most.

Stories like that of Francesca Tenconi.

At the age of 11, Francesca was diagnosed with pemphigus foliaceous, a rare autoimmune skin disease that can be fatal if left untreated.

The disease was painful and disfiguring and prevented her from feeling like a “normal” kid.

“The frustrating part of having a skin disease is that it is very isolating and they’re very visual illnesses, and I really yearned for a place where I could meet other children with the same illnesses,” she said in a TV interview in 2014.

 

A birthday wish come true

Five years after her diagnosis, Francesca decided to start a non-profit organisation to help children like her. She wanted to give them a place where they could meet others with similar conditions and enjoy the outdoor activities they were so often deprived of because of their illness.

So for her birthday, she asked her family and friends to donate money instead of giving her presents. The Children’s Skin Disease Foundation (CSDF) was created on June 3, 2000, a week after Francesca’s 16th birthday.

Francesca said her goal was, “to stop people staring and start understanding”.

Around the same time, Francesca heard of a camp for children with special needs in California and managed to get herself a place. It was there she met two doctors, Jenny Kim and Stefani Takahashi, dermatologists who wanted to give something back to their patients.

Together they set up Camp Wonder, which opened in August 2001. Since then the camp has run for a week every summer and has welcomed thousands of children with skin diseases.

Camp Wonder_Child and tutor

 

A week at camp

Summer camp is deeply embedded in American culture and more than 11 million young people go each year to canoe, hike, swim, camp, climb, ride and make new friends.

But for children with chronic and life-threatening skin diseases, normal camps are often off limits.  Francesca said in a video that the idea was to make Camp Wonder, “A place where they can just be kids for a week and forget about their illness, and we can see the kids underneath the illness. They’re kids to us first and patients second.

“The point of the foundation and of the camp is to let them run, play, get dirty and – yes – get into trouble every once in a while because at the end of the day they’re just kids.”

Camp wonder kids

 

One camper, Rebecca Rhodes, who came back when she was older to be a camp counsellor, said, “I walk more at camp because I feel I can fit in. Whenever I do walk it’s with a limp, so I don’t feel like people are judging me as much as when I’m at home.”

Brandi Sargent, another past camper, said, “When I’m at home and I’m just going out I’m very conscious about my body, but here I just don’t care.”

 

Free for all

According to the American Skin Association, more than one million Americans are affected by a serious skin condition.

Camp Wonder’s founders wanted the camp, which is run by medically qualified staff, to be free for all, no matter their colour, background, income or wherever they came from in the country.

The camp pays all the fees, including transportation. To enable this, as Francesca puts it, “We raise money all year long.”

Fortunately, the camp is supported by many groups and charitable trusts, including Nestlé Skin Health.

A division based in Fort Worth, Texas, became involved when Francesca asked if it could donate skin care products, but the company soon realised that it could do much more.

Nestlé has now been partnering with the Children’s Skin Disease Foundation since 2012, and each year staff receive time off work to volunteer at the camp. 

 

Confidence boosting                                                       

Camp Wonder also provides opportunities for young people to meet adults who have overcome skin and other physical difficulties to make their mark in the world.

Past visitors have included model Winnie Harlow, who suffers from the disfiguring skin condition vitiligo, and Paralympian Megan Absten, who lost her left arm in a car accident when she was 14.

Such meetings help the children to develop the confidence they need to deal with everyday life when they return home.

According to one Nestlé staffer who helped at camp, “It’s a place where kids who are patients for 51 weeks of the year have an opportunity to be just kids for one week of the year. And that one week of the year gives them a lot of strength for the other 51.”

 

To find out more, visit https://www.csdf.org/ .