Published Web Locationhttps://doi.org/10.5070/D318k1c6zz
Julie Winfield and Thomas Ray
Dermatology Online Journal 4 (1) : 9
May I share with you a very significant experience in my life.
For three summers I have been blessed to participate in the American Academy of Dermatology summer camps for children with skin disorders. The experiences with these children have transformed my life and career.
If you will, journey with me on a warm breezy summer day to two magical places far apart geographically but so much the same in many other ways.
Our first stop is Camp Knutson, a Lutheran Social Service camp 160 miles north of Minneapolis and 30 miles north of Brainard, Minnesota. Situated on a sunny peninsula jutting 4 miles into the Whitefish chain of lakes in Northern Minnesota, Camp Knutson (now Camp Discovery) has just completed it's 5th successful year. The camp grounds and surrounding lakes are breath-takingly beautiful and provide an ideal site for any camper to be!
The camp was realized through a lucky chain of events, and through the perseverance of it's founder Dr. Mark Dahl, and his wife Arlene. The Dahls, who have a summer cottage on the White Fish Lake chain, heard about a vacancy in the camp's schedule. After checking the camp facilities, they envisioned the site as a perfect camp for pediatric patients with skin disorders. The Priority Committee of the American Academy of Dermatology agreed, and start up funds were underwritten. In July 1993, 50 campers from across the country spent a memorable week at camp, with all costs, including airfare covered by generous donations. Since then, every camper has also been completely funded, including several international campers, such as children from Canada, Panama, Bahamas, and New Zealand.
The second stop of our journey is hundreds of miles away.
A few years earlier in Millville, Pennsylvania, the concept of Camp Victory was born as a means to help chronically ill and physically disabled children and their families. The camp was developed by Dennis and Lois Wolff after their experience of having a child born with biliary atresia requiring a liver transplant. Nicholas and his parent's struggle resulted in the establishment of the Nicholas Wolff Foundation in 1987. The family donated 35 acres of their own land as the camp site. Since Nicholas means victory-they chose to name the Camp Victory. This was very apropos, since Victory implies conquering adversity, and adversity is certainly what these children and their families need to overcome on a daily basis.
Camp Horizon also came about because of a lucky chain of events. In August 1994, Howard Pride, a Pediatric Dermatologist at the Geisinger Clinic in Danville Pennsylvania, returned home very enthusiastic after completing his first summer as a volunteer dermatologist at Camp Knutson. As good fortune would have it, Howard happened to hear that Camp Victory had an available week for the following August. With the overwhelming support of his chairman Dr. Fred Miller and the rest of the Geisinger staff, Camp Horizon came to be in August 1995. That first camp had 18 campers, and was a huge success. In August of 1996, there were close to 50 campers, and this past summer the camp grew to accommodate nearly 90 campers! This beautiful camp site continues to be a huge success.
Both camps are maintained primarily on donations. At Camp Discovery each child is provided with full tuition and transportation scholarships, estimated at approximately $1000 per camper. Contributions are primarily from individual AAD members, dermatological societies (WDS, PDS, DNA etc), allied health care groups (ie DEBRA, FIRST, NAAF etc.), industry, as well as many personal donations. This past year an endowment fund was started as well.
At Camp Horizon, camper tuition is also completely funded. Support is provided in part by the same sources as Camp Discovery, but also by local fund raising projects, the Lion's club of Pennsylvania. Many individuals from the Geisinger clinic and local area generously volunteer their time and services.
In both 1995 and 1996, applications for Camp Discovery exceeded the 50 children that the Minnesota camp site could accommodate. Fortunately, with the funding support of the AAD , Camp Horizon was able to provide space for the overflow of children. Thankfully not one child who applied and who met the criteria was denied the opportunity to attend. After careful consideration, for the 1996 summer, the AAD generously committed to completely fund 100 children, 50 children at each camp site.
For both sites, campers need to be sponsored by their dermatologist. The major criteria for eligibility are that the child have a chronic skin disorder and be between 10 and 13 years of age. Application forms may be obtained directly from the Academy and are also available on the AAD WebSite). The sponsor must be a member of the AAD and the applications must be received before the deadline. Each application is reviewed by the selection committee. Children with many types of skin disorders have been accepted. Examples include epidermolysis bullosa (including many children with RDEB and several with JEB), all types of ichthyosis, KID syndrome, ectodermal dysplasia, eczema, psoriasis, vitiligo, vascular malformations, connective tissue disease, proteus, BCNS and alopecia totalis, Netherton's & Olmstead syndromes, and others.
One thing I would like to emphasize is that the disorder doesn't need to be clinically severe. This has been a common misconception in the past, which unfortunately has resulted in many children missing the opportunity to participate. Certainly from my experience and those of my camp colleagues, the campers who benefitted most seemed to be children who were isolated and psychologically scarred by their disease, even though their clinical findings may have been relatively mild. So please consider all children with chronic skin disorders who fall within this age range and who may benefit from the camp experience.
Almost all camp counselors themselves have a skin condition. Besides doing a wonderful job managing the children during the week, more importantly they serve as excellent role models for the campers. Each year the counselors comment that working with these children is a very positive and rewarding experience. Please consider recommending your young adult patients for this important role.
For the summer of 1998 the two Camp sites include Camp Discovery in Minnesota (July 11-18 ) and Camp Horizon in Pennsylvania (August 15-22). Other sites may be developed in the future.
Now that I have provided the background information, we are ready to begin our wonderful journey together. I would like to introduce you to some of the the special people that make these camps so successful - the kids, the counselors, and really everybody involved that make these camps such a magical place to be.
Here at camp nearly 50 children with debilitating skin disease , most of whom face daily ridicule (stares) and realization that they are different, come together to have fun like normal kids. It is amazing to see the metamorphosis that takes place in these kids - and so quickly! Friends are made within moments of meeting. Although most of the children arrive at the airport somewhat nervous, by the end of the bus ride to camp, solid lifelong friendships are well on their way to being formed.
Try to imagine, if you can, the strength and courage it must take for a 10-13 year old to leave home for the first time, board a plane alone and fly off to a far away place completely unaware of who and what awaits them at the other end. Even for a child without the social stigmata of a serious skin disease this would be a difficult task, but for these children it shows true courage.
Spending time with these children will give you an appreciation for just how complicated their lives are. The complexity of performing routine daily activities is overwhelming. Bathing, dressing changes and meal time are not only very time consuming, but are often painful and unpleasant. We tried to schedule activities such as lengthy dressing changes so that they would not interfere with the fun camp activities.
Acceptance was universal!
Certainly early on some of the kids did show an interest in what kind of skin disease another camper had, but not once did anyone make fun of another person. There was a quiet, unspoken understanding of the pain and ridicule that each person had probably experienced in the past. These children all relished in the opportunity to be "just another kid" for just one week.
A journey through a typical camp day begins each morning with flag raising by Rob Larson at Camp Discovery and by Howard Pride at Camp Horizon. This is followed by meal time which takes place family style in the dining hall. Each meal starts with a song and ends with announcements of daily events and lunch room laughs. Lunch room laughs include silly things like a very messy pudding contest, whistling while eating marshmallows, and the counselors singing "YMCA" in front of the group. The kids really get a kick out of these events. Meals end with KP duty and each cabin group takes turns being in charge. Even the children in wheelchairs help.
One goal of camp is to encourage the kids to try whatever activity they wanted. We emphasize what the children can do, letting the child set their own limitations. It seems that EB kids will form blisters if they sit on the sidelines or participate, so why not participate if they want to. We can deal with the blisters afterwards. Of course all of this was within reason. The children enjoy setting their own boundaries and overall they seem to show very good judgement.
One of the rewarding experiences was how all the medical team works together. There is no firm delegation of jobs, when a job needs to be done everyone is involved. Each of us help with dressing changes, passing medication, and doing whatever else is necessary to meet the children's needs. We all work together for the same common goal; to make this a wonderful experience for the children.
The children have a very strong sense of community and help each other. The many examples of love and support the children give each other are a real highlight of camp week and a very touching thing to see. The children also share ideas on common problems and often trouble shoot together to find solutions.
The campers seemed to understand and accept each other's limitations without judgement or ridicule. It seemed as if the clothes under which the kids hid were shed, and for the first time in their lives they could expose themselves without shame or embarrassment.
Camp provided many opportunities to booster self esteem. For example, there is Jamie, an 12 year old with severe Herlitz junctional EB. Although he has a tracheostomy, a g-tube, and is primarily wheelchair dependent, he doesn't let this interfere with his passion for fishing. Jamie may have a lot of activities that he doesn't feel he can participate in, but fishing is his thing and he is great at it. Last year he caught 75 fish!! 50 in one morning! The last two years he has received the Camp Discovery "Fisherman" award and he is very proud of that. Many of the other campers shared Jamie's excitement and made it a point to congratulate him. This meant as much as the award itself.
All the children enjoyed arts and crafts activities-making tye dye tee-shirts, necklaces, painting clay pots, designing Gods-eyes, bird houses, drawing, etc. Several children were very gifted artists or cartoonists and they proudly displayed their work.
At Camp Discovery the beautiful waterfront provided many campers with their first lake experience. Most of the children loved the waterfront. Activities included waterskiing, canoeing, paddleboating, pontoon rides, snorkeling, sand castle building, tubing, or just hanging out. All these activities seemed to provide success and excitement. Most importantly, every child had the opportunity to participate in whatever activity they wanted. Since many of these children often experience a burning sensation from bath water, it was exciting to see them enjoy and have fun in the water, often for the first time.
Besides having a wonderful site for fishing and paddleboating, Camp Horizon has beautiful pond area with a large pavilion that is the perfect site for arts and craft activities as well as socializing. And of course, the pool was everyone's favorite spot for cooling off and relaxing.
Other fun activities at camp included; casino night, the carnival, hippie night with a dance, horseback riding, hay rack ride, western night with the cookout and line dancing, biking to the eagle's nest, archery, basketball, sand volleyball, Hawaii night dress, and just plain old "hanging out" together and socializing.
One of the very favorite activities was when Woodie Wolff came for an old fashion sing along around the campfire, followed by yummy s'mores and frightening ghost stories. He has produced many childrens tapes that he generously donates. He travels all over the country to perform for children primarily in the hospital but also at camps. It was a real treat having him at our camp and hopefully he will be able to return next year!
The funniest event of both weeks was the "ugliest or weirdest" counselor contest. Campers had an unforgettable time dressing up their counselors as "weird & ugly" as possible and then cheering them on for the contest. The counselors had a great time too. We all laughed until we cried.
Camp Discovery is about- FRIENDSHIP, FUN, ACCEPTANCE!!!! This is clearly evident on everyones face during the week and reiterated in the letters and evaluation forms following camp.
These camps are very special. Words, videos, and pictures cannot really paint as beautiful a picture or adequately express the magic of the experience. In one short week you give your heart and soul to 50 children and you come away so much fuller. Over the last 3 years my life has been touched and filled with the magic from a multitude of beautiful heroes. I hope that in some small way I have helped you to also be touched by these special children.
I would like to conclude with a quote by Dr. Mark Dahl, former president of the AAD and the founder of Camp Knutson. "Camp Knutson has been blessed with magic of transforming kids, counselors and dermatologists. Few who visit leave without a profound sense of community, caring, and courage. An indelible mark is left on those who attend."
In closing there are so many people who deserve thanks for making these camps a success.
There are the very hard working dedicated nurses, counselors & camp staff. They graciously give up a week of their summer with enthusiasm, sensitivity, and understanding.
The support medical staff, Drs. Mark Dahl, Spencer Holmes, Howard Pride, Tor Shwayder, Meg Lemon, Lori Steinberg, Roger Ceilley, Fred Miller, Robert Dickey, Victor Marks, and many other members of the Geisinger staff and others help make these weeks possible. They all give so much of themselves.
Several members of the AAD administration, especially Debbie Kroncke and Sandra Gordon, spend countless hours taking care of all the intricate details necessary to make sure the week runs smoothly. We could never do what we do without all their help.
The American Academy of Dermatology and many individuals and corporations have generously donated time, money, and supplies. Only by their support can this vital project continue to flourish.
Last, but certainly not least, a special thanks is given to Mark and Arlene Dahl and to Dennie and Lois Wolff for their vision and perseverance to make it all come true.
And to each of you;
Thank-you for sharing this journey with me - it is a trip filled with many rewards and one I hope I'll always be able to be a part of for many years to come.
© 1998 Dermatology Online Journal