By Chris and DeAnn Huxman In 2001, our second son, Tyler, was born with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. We had never heard of EEC, had no information about it, and had no idea what the future would hold. We didn’t know where to turn or where to find information. While searching the web for anything about EEC,…
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…
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…
Sharing the Excitement of Research
By Maranke Koster, Ph. D. I first became aware of the NFED, and of ectodermal dysplasias, while investigating the role of a gene by the name of p63. The striking similarities between mice lacking a functional p63 gene and individuals affected by ectodermal dysplasias suggested a role for p63 in these disorders. Sure enough, it…
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…
Camp Discovery to the Rescue!
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…
Ronan, Our Unborn "Celtic" Legend…What a Shock and a Joy!
By Dennis Claire, D.P.M., Father of Denny and soon to be Ronan Well before she was pregnant, my wife said, “If it’s a boy, he’ll be named Ronan.” Our first son, Denny, had a name which was predestined through generations of naming a son in the family Dennis. I didn’t want to break Irish tradition, and…
Overwhelmed With Love and Belonging!
By Terri Andrews I was born in a little rural area in Alabama in 1959. Not much was known about ectodermal dysplasia nor the type of ectodermal dysplasias I was born with called ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. If I received any type of major treatment or surgery, I had to travel at least 100 miles, which was not…