Meet Our Families

"“The NFED helped us make connections with other parents who have children with Goltz syndrome. ” ". -Hoffman Family

On January 8, 2004, our beautiful daughter Madison was born. My husband and I were given a few short minutes with her before she was transported to a children’s hospital for her first of many surgeries. At seven days old, a dermatologist diagnosed Maddie with Goltz Syndrome, which is one of the ectodermal dysplasia syndromes. One of only 30 known cases in the United States, Maddie is one of the most severely affected individuals to ever be recorded.

Just when we thought no one could answer our questions about this disorder, we found the National Foundation for Ectodermal Dysplasias (NFED). The reassurance and support offered by the NFED through that first phone call and the informative packet they sent showed us that we were not alone. The NFED needs your support to prevent other families from feeling isolated.

During the first three years of Maddie’s life, she required at least six doctor appointments per week, often more. Most new families enjoy having their new baby at home, watching the baby eat, sleep and grow. Maddie endured napping between appointments and eating in the car, pulled over on the side of the road during rush hour.

My gratitude for the NFED knows no boundaries. Not only did they clarify my daughter’s diagnosis, but they gave me a very real, positive perspective on what life could be like for our family. The NFED helped us find knowledgeable doctors in our area, and introduced us to incredible physicians that we would choose to see all across the country.

The NFED helped us make connections with other parents who have children with Goltz syndrome. Without the support I received from DeeDee, whose daughter Jade is affected, I honestly do not know what I would have done during that first year. When eye doctors in Atlanta declared that my child had gone totally blind, another NFED family shared information about a doctor in Detroit who had helped their child. This doctor restored Maddie’s light perception. These friends, made because of the NFED, gave us one of the greatest gifts we will ever receive.

Maddie teaches me patience. Every single developmental milestone has been a challenge for her. Maddie works so hard for each of the things that come easily to her peers. We take pride in that alone. Eventually, I learned that Maddie’s day would come. The NFED gives me that hope.

Every year, the NFED organizes the National Family Conference. At this life-changing event, families learn more about ED and can share their stories with other families who understand. Our children participate in the wonderful “Kids’ Camp,” where they make friends with kids who are just like them. Every child deserves the chance to feel like they belong, at least once in his or her life. The NFED provides this opportunity to children who may not experience that without them.

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