By Randi Walker I can still remember walking in to our first NFED Family Conference in Colorado Springs, Colo. 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 (XLHED), but his doctors had never heard of…
Similar, But Unique
My name is Aaron Aselage. My father, brother, and of course, myself, all have ectodermal dysplasia. To say we had it rough as children is an understatement. Each of us had similar issues, but we’re also unique. For instance, my brother had a more intensive surgery than myself in terms of cleft palate and dental work,…
We are Family! My Brothers, Sisters and Me!
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,…
Pen Pals Across the Pond!
By Peter Brennan New South Wales, Australia When our children, Alice and Tom, were born, we were fairly sure where the parenting phase of our lives would take us. We would live in our little house in Sydney. Our children would go to the local school. We would celebrate birthdays and the holidays. We thought…
My Story: Emotional Resilience and Hope
by Marcela Hernandez Lack of confidence has daunted me all my life, from childhood and even into my adult life. I was born and raised in Uruguay, a small country in South America, the youngest child of a middle class family. They supported me and gave me everything within their possibilities, from material things such…
Why I Volunteer for NFED: My Son and Others Like Him
By Jill Radley I found the NFED in 1992, upon the recommendation of my childhood dentist at the University of Minnesota. When I received the literature packets I had a light bulb moment. I looked at the pictures and I felt that I was looking in the mirror. It explained so much to me. I…
What A 10-Year Old Girl With HED Wants Her Dentists to Know
The following is a speech delivered by 10-year old Allison at a Dental Pathology Class in the Dental Hygienist Program at Des Moines Area Community College. She and her mother, Jenny, presented at the class for Ectodermal Dysplasias Awareness Month. Hi everyone, my name is Allison. I am a 4th grader in Iowa. My parents tell me that…
The Best He Can Be
By Gina Quintanar It’s been almost 16 years since my son Alex was diagnosed with ectodermal dysplasia. He was about four months old when I took him with me to a dentist appointment. The dental assistant was playing with him and asked if I had ever noticed that he had no body hair. I said that I…