It was 1981. Virginia Higgins was just five years old when her mom, Fredia Shimchick, heard about a mom in the area who was looking for other families affected ectodermal dysplasias. It was music to Fredia’s ears since she knew little about the ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome that affected little Virginia and her younger sister, Denyse Shimchick.

That other mom was Mary Kaye Richter. She was on a mission to create an organization for families affected by ectodermal dysplasias. When the Shimchicks learned about Mary Kaye’s passion, they jumped right in! They were one of the original 12 families who founded the National Foundation for Ectodermal Dysplasias (NFED) in Mascoutah, Illinois on December 24, 1981.

Virginia fondly recalled those early days.

“The NFED was a huge support to my family when I was growing up. At the time, my mom didn’t know much about what we were affected by. And so it was a huge emotional support to her to find the NFED. And while not much was known as a whole about the ectodermal dysplasias at the time, just having a support group was very important.”

Their Ectodermal Dysplasia Family Home

The NFED quickly became the home that the Shimchicks not only helped support but would turn to time and again. 

“My sister and I always had each other as a support system, which was really key because a lot of people don’t have that,” Virginia said. “But knowing that we weren’t the only ones, that there were others besides our family, was really huge.”

Fredia and her daughters attended the very first NFED Family Conference.

Other than Mary Kaye’s family, there is no other family that has been as actively engaged with the NFED for all 40 years than the Shimchick / Higgins family. They became active from the onset. The day of the conference, Fredia went home and wrote a letter to Mary Kaye at the NFED.

This day, September 25, 1982, is but a milestone on the road to discovery. May many more people find us and may we find them. Reach out and touch someone. Share the experience and go forth. Spread the word.

– Fredia Shimchick

Led by her mama and with support and encouragement from the NFED staff, that’s exactly what Virginia did. She has been an active volunteer at each stage in her life and used her voice to educate others. As a youth, she volunteered at the dinner/auction fundraisers and served as a pen pal with other affected teens.

At 16, Virginia wrote to ask if she could volunteer at the office.

In the days before email and texts, young Virginia often wrote letters “home” to Mary Kaye and the NFED. And when she got her driver’s license, she began to volunteer, “just to help repay you for everything you’ve done for me and my family.”

Fast Forward: 30 Years of Family Support

Virginia’s appreciation for the Foundation has only grown.

“I am extremely grateful to the NFED for being the family that they are and that they have been to our entire family,” Virginia said, getting choked up.

Every member of the NFED staff has always treated us like we are members of their very own family. They’re not just paid staff. They are family. And that goes also to the volunteers who are so incredibly dedicated to the NFED. They have always treated our entire family like they care about us. And that’s why we say it’s not just a foundation. It’s a family.

– Virginia

A Loving New Addition to the Family!

When Virginia and her husband, Brian, welcomed their son, Zane, in 2007, the NFED was able to help in important new ways. He, too, was affected by AEC syndrome. Virginia quickly learned that her personal experiences helped but she needed more support.

“It’s one thing to grow up affected by a rare syndrome. I know how AEC syndrome affects me. It’s an entirely different emotional ball game to be the parent of a child that’s affected. I know what works for me, but what works for me might not necessarily work for my son. The challenges that I faced may not necessarily be the challenges that he faces, especially with AEC syndrome that has such a range of affectations. Just being able to say to other parents, other moms, what did you do about this? You know, how did you handle that?”

Talking to those first NFED families way back in the early 1980s helped Fredia have high expectations for her daughters. Virginia recalled her junior high days when she was determined that she wanted to run track, even though she couldn’t sweat. Her pediatrician told her mom, incorrectly, that “she can’t run track, she’ll die.”

“And I said to my mom, ‘You said, we get to set our own limits. I want to run track.’ And so my mom swallowed her pride and her fear and all that goes along with letting your kids to do something that the doctor said is ill advised, and let me run track. And, of course, I passed out on the track! But my mom, let me do that.”

“Now, I realize as a parent, how incredibly hard that was for my mom. By learning and listening to other NFED parents and how they face challenges with their kids and what not, they gave me a new respect for my own mom. That’s all part and parcel of being part of the foundation family.”

Sharing tips and talking with other parents has been a part of Virginia’s volunteer role as an NFED Family Liaison. This role is one in a long list of ways she’s helped the Foundation. She has written guest blogs, talked to the press, volunteered for research, spoke at events, and advocated to Congress. When the Foundation asks, she joyfully says, “Yes, anything I can do to help.”

“I’m the one that sent high school graduation announcements to the foundation with invitations,” Virginia laughed, “Because, you send those to family and that’s what everyone is, you know?”

A Letter Home

Fourteen-year-old Virginia wrote Mary Kaye in 1990, sharing how her life was going and talking about that track episode. Attending Conferences and meeting other kids was giving her new found confidence.

“I am now 14 years old and have made wonderful progress with my disorder.  Most of all, I thank my mom, who has always been there. From not being able to hold me (due to skin erosions), to crying when I take new risks. But I also give thanks to you and just as importantly, to the NFED, for teaching me all I need to know about my disorder and teaching me that it is okay to take risks, as long as I also take precautions. Thanks for always being there with a ready answer, and if you didn’t know the answer, doing your darndest to find it out. I couldn’t smile without you!”

Virginia, we certainly couldn’t smile without you either!

Will You Help?

The NEFD has proudly been home to thousands of families affected by ectodermal dysplasias like Virginia’s. We started with 12 and now lend a caring hand to more than 9,200 around the world.

With your support, we will continue to aspire to Fredia’s hope that many more find us and we find them.

To celebrate the NFED’s official 40th anniversary on December 24, please consider a gift to the NFED family.

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