When I first learned about Camp Discovery, I thought this is perfect for me! I love working with kids, I have a background in both teaching and dermatology, and I love the outdoors. As I researched further, I learned that Camp Discovery is a collection of six weeks of camp located in five different locations around the country. The American Academy of Dermatology completely subsidizes these camps with the help of generous donations and about 380 kids between the ages of 8-16 attend camp each summer. How could I pass up such a terrific opportunity to help out?
I was so excited to discover that I had been chosen to attend Camp Little Pine located in Cross Lake, Minnesota for campers ages 10-14. I would be part of the medical staff assigned to a group of six to eight campers. I had a basic packing list, my travel itinerary, and valuable insight into the size of Minnesota mosquitoes…what else could I need? As my husband dropped me off at the airport, I wondered if I really knew what I was getting myself into. As it turned out, I had no idea.
I went to camp thinking I would be the one providing help and service but I would soon realize that I was the one who gained so much by way of knowledge, compassion, empathy, and gratitude. I was assigned to a group of six energetic and adventurous 10 and 11 year old girls. Each of them have been diagnosed with various skin conditions ranging from alopecia (loss of hair), to vitiligo (loss of skin pigment), to various degrees of Epidermolysis Bullosa (EB). For the most part, EB is an inherited skin condition in which the skin blisters with the slightest amount of trauma. This condition comes in many forms ranging from mild to severely disabling and life threatening. That brings me to Michaela.
Michaela is 19 years old and has been attending Camp Discovery for nine years. She is smart, witty, kind, considerate, and loves everything about camp! Since Michaela is older than camp age, she attended this year as a camp counselor. Although she was very willing to help whenever possible, she also required a significant amount of attention and support. Between myself and an awesome dermatology resident named Cathy, our time was essentially devoted to caring for Michaela. Due to the severity of her EB, her hands have slowly progressed over time to resemble mittens and her legs have contracted to where she cannot walk and is bound to a wheelchair. This severely limits her ability to perform even the most basic activities of daily life. Her chronic blisters now cover at least 80% of her body and she requires continual infusions of morphine just to tolerate the pain. She also takes other medications to ward off infection and temper the pain caused by exposed nerve endings. Every day is a struggle and she relies heavily on help with just about everything. Her morning and bed time routines take about an hour and a half, she requires a feeding tube for nutrition, and bandage changes (which take place 2-3 times a week) were an exhausting and excruciating 4+ hour affair. Some may wonder why this girl would even come to camp when she is in such a fragile state, and to be honest I was one of those people. Then I learned something that completely changed my scope of thinking.
Michaela suffers from Recessive Dystrophic EB (RDEB) which is the most severe type of EB. Her decline has been rapid over the past year and we learned that she is now on Hospice. Her last desire in life was to attend Camp Discovery as a camp counselor. She wanted more than anything to return to the place that has given her so much joy and peace over the years. Now, more than ever, she needed to feel that peace once again. Upon hearing this I was immediately humbled. A feeling of love and gratitude swept over me and all I wanted was to make this week the very best for Michaela that I possibly could. Cathy and I decided that we would provide the highest degree of medical and supportive care but at the end of the day we needed to allow her to just be a kid in whatever way possible. That is the ultimate mission of Camp Discovery. The kids that attend camp are often defined by their skin condition. Most of them are teased by their peers, misunderstood by the public, and are all too accustom to doctor’s appointments, medicine, and treatments. Camp Discovery strips all that away and provides an opportunity to be surrounded by others who are just like them…where they are free to be a normal kid at summer camp.
By: Theresa Helsel, MS, MPAS, PA-C