By Dee Dee Olsen I have led a most beautiful life. I have been graced by God with loving parents, devoted sisters, brothers-in-law, six incredible nieces and nephews, treasured friends and a husband who embodies strength, hard work and consideration. We brought three little people into this world. They breathed new dimensions of love and…
The Moment My Son Taught Me About Strength
By Seth Ferris I live in Brooklyn, New York. And during any given week, any given day, I come in contact with millions of people, some of whom are not too shy about telling a complete stranger what they think of them. You bump into somebody and get a “Hey! Watch it!” or worse. You…
The Choice is Obvious! Because I Can!
By Kristin Matus Kelso “Do all the good you can. By all the means you can. In all the ways you can. In all the places you can. At all the times you can. To all the people you can. As long as ever you can.” ― John Wesley I’m often asked why…
Sweat It Out: The Duke Family’s Journey
By Jamie Duke I learned about hypohydriotic ectodermal dysplasia over two years ago when my son, Nicholas, was diagnosed with XLHED. I knew he couldn’t sweat, but I didn’t truly know and understand until he asked me why my skin was wet after I came back from a run. That hit me hard. I looked…
Fulfilled by Fundraising for Our NFED Family
By Rich and Aimee Klinger We packed our four children and luggage into our nine-passenger suburban on Sunday July 22, 2012 and headed south from our home in Halifax, PA. As we departed, we were skeptical about our adventure. We had traveled 1050 miles in approximately 18 hours to Orlando, Florida to attend our first NFED Family Conference. We…
Geismar Family Gives Back with Annual Halloween Bash
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…