EEC Chick at Work

September 23, 2015July 25, 2019 Category: Stories of Hope Posted by Lea Richardson

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 I could sweep into their lives and say “Look at me, it’s not so bad! Your kid will be fine!”

During a winter break from my university studies, I was working a temporary job at the local children’s hospital. All I had to do was collect people’s identification stickers as they were leaving the hospital. One day, a young boy and his mother came through my line. The boy was struggling to remove his sticker, so I leaned down and asked if I could help. His mother quickly answered “Let him get it… he can do it himself!” and it was then that I realized that he had ectrodactyly.

I showed the little boy my hands and said “Look, my hands are just like yours!” I talked to the mother for a minute, but after helping another patient, I turned around and they were gone. I never did get their contact info or see them again. I wished that we could have talked more.

After that experience, I started thinking of ways I could help other families affected by ectrodactyly, cleft lip and palate, or ectodermal dysplasias. My first thought was to volunteer at the hospital, or to start my own support group. Then I remembered the NFED. My parents had gotten their newsletter, the Educator, since I was a wee lass. I decided to see how I could get involved.

I went to the 2011 conference in St. Louis, and soon found myself comparing hands and feet and stories of surgery and dental treatment with others. I knew then that I had found the niche where I could focus my energy. I immediately discovered that not only could I be a positive example to others, but that I would be continually influenced by those I met through the NFED.

Before long, I became a family liaison and was making contacts all over the United States and beyond. In my role as a liaison, I get to lend a listening ear to anyone that needs one. I can help people connect with other affected families or with proper medical care.

Recently, I became the volunteer project coordinator for the NFED blog. I work behind the scenes, recruiting new writers and stories, editing, writing, adding photos and formatting. I do this in addition to keeping up my own blog, EEC Chick.

I enjoy lending my talents to the NFED because I truly care about the organization and all of the people involved. It is my hope that every family affected by ectodermal dysplasias will easily find the NFED and reach out to their closest liaison to make the connection that will change their lives forever.

Editor’s Note: Heather McKelvie serves as the Family Liaison to families in Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island and Vermont.

Would you like to volunteer with the NFED? Email Lea Richardson, NFED manager, community engagement, at lea@nfed.org or call her at 618-566-6871. You can also learn more about volunteering on our website .

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