By Lindsey Higgins
When I was six years old, I was officially diagnosed with ectrodactyly-ectodermal dysplasia-cleft lip/palate syndrome, also referred to as EEC syndrome. As most of you already know, EEC effects one’s teeth, hair, nails, sweat glands, tear ducts and skin.
After feeling alone and confused most of my life, and uncomfortable in my own skin, Camp Discovery came to my rescue. The summer of 2006 my dermatologist recommend to my parents that I go to an all expense paid sleep away camp for kids with different chronic skin disorders. It was staffed by adults affected by various skin disorders as well as dermatologists and pediatric physicians familiarized with the conditions of the campers.
He said that it would help me to realize I was not alone and that there were people out there that I could connect with and would understand me in ways that my friends and family could never fully understand. At nine years old, the idea of riding an airplane for the first time all alone to go to a camp in a different state with kids I didn’t know was both exciting and probably the most nerve-wracking experience of my life. But it was also the single best decision I have ever made.
When I arrived on camp grounds for the first time I had no idea what to expect. I had never been away from my family before and I began to grow homesick. The med staff now tease me and tell me that they didn’t think I was going to last the whole week, I was so pitiful. By the third day I started to form a friendship with the girl I shared a bunk with. Her name was Kiley and she is affected by alopecia areata (a hair loss disorder). It was her first time away from home as well and we decided that we were going to make it through together. We signed up for all the same activities, stayed up late laughing and even did the talent show together. By the end of the week neither one of us wanted to leave (we even thought about “accidentally” missing our bus to the airport so we wouldn’t have to go).
Kiley and I have been the best of friends for going on 10 years now and laugh when we think back to our first year homesickness because we can’t imagine wanting to be anywhere more than camp.
Through camp I have met some of the most influential people in my life and established what I call my second family. We find strength in one another, share our experiences with and provide support for each other at our weakest times.
Although camp is but one week out of the entire year, there is not one day that passes by that I am not in contact with someone from my camp family. As former campers, we have grown up together and many of us now co-counsel. We have created these life long friendships and support groups that will last us forever.
Beyond friendship, camp has given me more than I could have ever hoped for. Camp taught me to love and accept myself for who I am. It gave me confidence and I learned to be thankful for the life I was given. Growing up, my parents would say that there was always someone out there who had it worse than I did, and as a child I never really grasped that concept because I was surrounded by normal people who seemed to have it so much easier than me. Camp forever changed my perspective on life as it showed me that they were right and humbled me as I came in contact with disorders that were clearly more limiting and severe than mine.
I have returned to Camp Discovery every year since 2006 and it has become an important part of my life. Last summer I had the opportunity to return as a counselor
and provide other children with the same life-changing experience that was given to me. I am preparing for year two as a counselor this August. I love that I am given the opportunity to teach these kids that they are not defined or restricted by their disorder. I cannot express how highly I recommend and encourage kids affected by ectodermal dysplasias to go and seek out the life changing relationships and experiences camp has to offer.
Share Your Story[/button]