By Nancy Nelsen, Guest Blogger We attended the National Foundation for Ectodermal Dysplasias (NFED) Family Conference during the summer of 2015 in Colorado Springs. Neither of us, my husband, Karl and I, were prepared for the emotions that filled us as we listened to other families’ stories, and told our own. We felt supported, connected…
A Friend Diagnosed My Grandson
By Nancy Jane Johnson I’d like you to meet Ethan Noble. He lives in Ellensburg, a small college town in the middle of Wash. which has quite distinctive seasons, snow in winter, 100+ degrees for a short time in summer and lots of wind! Ethan was born in York, Maine and is almost 15. He…
A Shot of Courage and Lavender Cooling Mist
By Liz Timmerman Just over a year ago, my youngest daughter, Violet, was diagnosed with hypohidrotic ectodermal dysplasia at the age of one year old. The first year of her life was filled with many challenges and I was seriously starting to doubt my abilities as a mother because my baby was always so unhappy, couldn’t…
Spot the Difference?
Mary Emma Roberts is now 12 inches of hair lighter! Mary Emma is six years old, but she began donating her hair to charities two years ago when she was just four. Already at this age, Mary Emma had eight inches of hair to spare. So, Mom, Kara Roberts, decided the time had come to…
Amelia’s Story With AEC Syndrome
Amelia is a teenager who is affected by ankyloblepharon-ectodermal dysplasia-cleft lip and/or palate (AEC) syndrome. When she was born, she had toes that were connected and a few other signs that were different. She started turning blue at two hours and lived in the NICU for months. She was suffering from chonal atresia. Maggie, her mom,…
Maximus’ Story with Goltz Syndrome
After a normal pregnancy, Brandi and Corey knew right away that something was wrong when their son, Maximus was born. He had a wound on the top of his head, fused fingers and a missing toe. The nurses were hesitant to wipe off the newborn in fear his skin may slough up. In this interview,…
Suzanne’s Story with EEC Syndrome
Suzanne lives in Pennsylvania with her husband, Will, and their children, Caitlin and Tyler. Mom and son are both affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. This tenacious educator grew up never knowing that her symptoms were actually a part of a genetic disorder. In this interview, Suzanne discusses growing up without a diagnosis, finding her…
Maverick’s Story With HED
Roy and Leslie welcomed their fourth child and first son Maverick in 2009. From the beginning, he had signs that made him different than their other three children. He was sensitive to the sunlight where they lived in Texas and only wanted to go outside at night. When Maverick finally developed a few teeth and…