By Randi Walker
I can still remember walking in to our first conference in Colorado Springs, Colorado. Weston, our only child at the time, was three years old. Those first three years were quite difficult. Weston had experienced several symptoms of X-linked Hypohidrotic Ectodermal Dysplasia, but his doctors had never heard of it so Weston went undiagnosed. We were so confused and scared, knowing something wasn’t right and not having any answers. We found our answers after using Google and coming across the NFED website.
The annual conference was coming up and we knew we needed to be there. We were
awarded a scholarship to cover the conference fees and what a help that was! We booked our flight and headed to Colorado. When we first walked into the conference, we immediately noticed that everyone looked like us, no one stared at us for looking different. No one asked if we had cancer or why we didn’t have any teeth. Everyone just smiled and welcomed us with open arms. People were telling me how cute my Weston was, this was not something I heard very often from strangers. We instantly felt like we were at home!
I think I cried throughout most of the conference because I was just so overwhelmed with joy. What a comfort it was to meet other families who knew every struggle, every emotion, every setback that we had experienced over the last three years. I never felt like I had to explain myself to anyone there, they just knew. Throughout the conference, we attended meetings and met with doctors. We learned more than we could ever had hoped! Everyone had such valuable tips on keeping Weston cool and safe. There were people there to teach us what to expect as Weston got older. We felt so prepared to tackle the challenges we faced.
The conference wasn’t all meetings and medical jargon. There were events planned for the children, activities for them to play with kids that were just like them. Weston made important, lifelong friends at the conference; we all did! It is so vital to have a support system of understanding, caring people and we found that at the conference.
Making the decision to go to the NFED conference was the best decision I’ve ever made for my family and myself. I’ve been back 3 times, bringing my other 3 children, all affected by XHED. The opportunity to bond with families just like us is an experience we don’t take for granted. We met our family at the NFED conference and we couldn’t be more grateful for all of their love and support throughout the years.
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