By Heather McKelvie
In 1996, my mother and I went the Family Conference, which was in St. Louis that year. Looking back, I don’t remember very much about it. Perhaps because I was a teenager, I was in denial about the fact that my EEC was a life-long condition that I would always have to deal with. I did not want to dwell on the things that made me different, because it made me unhappy. So I went to the conference not really wanting to admit that I had anything in common with anyone else there. My mother seemed to get a lot out of the lectures, and enjoyed talking with various people. I looked around for cute boys and tried to look as bored as possible. Once we left St. Louis, I didn’t give the experience much thought.
Fast forward to 2011. After some intense self-reflection, I decided it was time that I stop ignoring the thing that made me most unique. I had always imagined that one day I would be able to help families of children like myself. To serve as a role model and an example that with time and perseverance, things work out in the end. Now was the time for me to get up and do something about it! I contacted the NFED and found out that they just happened to need a liaison for the New England area. I also found out it was not too late to sign up for the Family Conference that year. Before long, I was on a plane bound for St. Louis for the second time in my life.
I arrived at the hotel that evening feeling a little nervous. I saw a few people with tell-tale ectodermal dysplasia characteristics milling about the lobby. While standing in line for the check-in, I noticed a family walk in the door. It was a mother with three kids, the youngest of whom had EEC. He was smiling from ear to ear and began chasing another boy around the lobby area. I met the mother’s eye and smiled. The next morning, I would meet this family again and Jeanne, the mother, would invite me to sit with them at breakfast. I found out the boy was named Nollan and his older sisters were Audrey and Lauren. They were all so friendly, and made me feel instantly comfortable. We talked about everything from where the girls wanted to go to college, to the way Nollan’s hair stuck out at every angle, no matter how they tried to comb it, to our experiences with ear problems related to EEC. As the conference progressed, I met more and more people, all of whom were friendly and curious to know about me, as well as share their experiences. The environment was like a big family get-together. I saw kids running around who reminded me of myself as a child, and I saw adults who looked more like me than my actual siblings do. It was a surreal experience, and one that I will not soon forget.
I would encourage anyone who has the opportunity to attend a Family Conference to do so. I would expect that if you are a parent of a young child who is newly diagnosed with a form of ectodermal dysplasias, the experience of attending the conference would be life-altering. Where else would you be able to meet so many people who know just what you are going through? Any questions or worries you have can be answered and your confidence restored by talking to other families there. If you are the parents of an older child, think of the benefits for your child to meet other children who look similar and who know what it’s like to be affected? As an adult, I found the conference to be therapeutic. I laughed and I cried. I remembered things I had forgotten long ago, and I saw the energy and joy of the children running around and remembered how I was as a child. I vowed to recapture that energy and spirit and not let my differences hold me back from letting my true self shine at all times. I’m a better person for having attended the conference, and I look forward to being a part of many more. I hope to see you in Orlando!Share Your Story