By Alice Geismar Seventeen years ago this November, my husband, Bruce and I were awaiting the birth of our second grandchild. Our first grandson, Jack was almost two and we were enlisted to watch him while Ruth and Keith went to the hospital. It was immediately apparent that Ryan had serious problems. He looked like…
A Lighthouse to Guide our Lifeboat
By Jenny Steele Three years ago, we heard the term ectodermal dysplasia for the first time. An internet search introduced us to the NFED. With a few clicks of the mouse, we found a wealth of information and a community of people who understood what we were facing. The NFED family would become a lighthouse…
EEC Chick at Work
By Heather McKelvie I volunteer for the NFED because I want to be part of something that is bigger than myself. When I was growing up, I secretly hoped that someone I knew would have a child with EEC, or at the very least, with a cleft lip and palate, or ectrodactyly. I imagined that…
Off the Radar!
By Marc Steingesser I volunteer for the NFED for two reasons: Those of us affected by ectodermal dysplasia are part of a rare group with unique life challenges that can sometimes place us outside the box and off the radar of the mainstream world. It can be difficult to find well-informed medical professionals able to…
Howdy!
By Susan Hamm I’ve always been the type of person to volunteer for projects or causes I was passionate about and the NFED was no different. I attended my first Family Conference and came home with an overwhelming amount of information on this syndrome that I had barely learned to pronounce. After processing what I…
I'm on My Way!
Good evening! I am in Hayes, Kansas and headed for Denver and then to Colorado Springs. I am on my way! We have Tim’s Expedition packed to the max and of course, full of my treats for the drive. We left last night after Tim got home, a little later than we hoped. The wind…
Four Days of Normalcy
By Rachel Dahler Every summer during the third week of July, the NFED hosts a National Family Conference. This has always been my favorite time of year. I went to my first Conference in 1995 when I was six and have been to 15 since. I can remember when I was younger, printing out countdown…
I Want to Keep My HED
By Lindsey James I became a mother on April 22, 2008. I had spent nine months preparing myself for the most important responsibility I would ever have. I was a sponge, absorbing all the information about pregnancy and motherhood I possibly could. My pregnancy was pretty uneventful and my labor experience was a dream. Everything…