Lee on top of the world in 2008.

By Mary K. Richter

It was 1986, just five years into the life of the National Foundation for Ectodermal Dyslasias when I received a call from a mom in Oklahoma. I can still hear that sweet voice with a bit of southern twang.  There was no doubt in my mind that I was talking with a mom full of love for her family and wanting to know everything she could about ectodermal dysplasia.

Mind you, we were still in the learning stage (I guess that’s still true) but much was to be learned in the ensuing years. One thing we talked about was the value of early dentures and how to find a dentist who would help. When it came to her kids and their needs, Karen Goggin was relentless.

Lee was just four years old, his sister, Rachel, was two and his younger brother, Aaron was still a glint in her eye. When the boys got their first dentures, I suspect that neither liked their mom or me very much.  But Lee and Aaron are examples of the positives that come from having them made.

Lee and Karen Goggin at an NFED Family Conference in 2001.

Family stories suggest that Lee was a bit more compliant but either way all of Karen’s children grew to be loving family members, reason for having great pride, as adults, positive contributors to society and in all things faithful to God. Sadly Karen, too, passed much too soon as the result of a brain aneurysm. How proud she would be of the family she raised and those they are now raising.

Tragic Accident

This week, Lee’s precious life was cut way too short by a freak accident on a sand dune in Saint Augustine, Florida. That day, my son, Chuck, walked into my office and basically said, “Leave it to Lee to build a cotton-picking cave in a sand dune and doing so with exuberance and all the strength that strong body could give it.”

Chuck Richter and Lee Goggin

There are just four years between their ages so Karen and I got to watch both of them grow. Lee wasn’t a half-way kind of guy. For him, it was everything all of the time.

The value of a life is hard to put into words. But fellows affected by a unique and rare condition make an extraordinary impact on younger individuals. When Lee walked into a room you knew he was there; not only because of his height but because of that enormous smile that radiated from him.

Lee (left) showing his silly side by dressing up with a friend he made at an NFED Family Conference.

Lee’s Impact

He was never too busy to talk with a little guy or even a teen who may have been struggling. Lee and others similar to him are invaluable to the ectodermal dysplasia population but to parents as well. In Lee, they saw a bright future for their own children which they now knew could include a beautiful wife and gorgeous, precious children. Yes, Lee was invaluable. Clearly, a man among men.

Lee, Courtney and their three beautiful children.
Lee, Courtney and their three beautiful children.

My sorrow is deep but can’t compare to that of his family who love him so. I can hear Karen say, “Now Lee, what in the heck are you doing here?”  But yet she and God surely greeted him with loving and open arms.

Losing Lee brings to mind another fine young man in our NFED family lost many years ago. He, too, was tragically lost in a bizarre accident—this one a hiking trip during which a boulder fell on him. What are the chances of either of these things happening?  That we will never know but in both cases men of God lived admirable lives for which many others fail to succeed. Gone too soon but goodness what a delight and pleasure it was to know them.

This is Lee being Lee!

As days pass and memories eclipse the sadness of the moment, we will once again revel in the man Lee was, the example he set and an antic or two that come to mind. I want to share my love and condolences with his family and to all in the ectodermal dysplasias community that are grieving, too.

Rest in peace, dear Lee.  My heart is filled with love for you.


Mary K. Richter is the founder of the National Foundation for Ectodermal Dysplasias and served as executive director from 1981-2010.


(Editor’s Note: All of us at the NFED send our heartfelt sympathy to Lee’s wife, Courtney Goggin, their children and his family. He was a extraordinary man who had a big heart and smile. We shall never forget him. Our staff who had the pleasure and honor of seeing him grow up, of working beside him and of laughing with him, are grieving. This article in the Dallas Morning News from 2011 captures his winning spirit and how he never let ectodermal dysplasia define him. Courtney asked via Facebook, “If you knew Lee Goggin and have any cool, funny, sweet stories and/or pictures, please send them to leegogginslegacy@gmail.com. I would love very much to make a book out of them to read to my sweet children for years to come.”)


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7 comments on “Remembering Lee: A Man Among Men”

  1. 1
    Debbie Reed(Randi’s Mom) on February 1, 2018

    Awe, Mary Kay, beautifully said! What true love Lee had for his family and his NFED Family! Rest In Peace, Lee! 🙏🏻💙

  2. 2
    Katie Anderson on February 1, 2018

    I remember meeting Lee at a family conference we attended several years ago. My son, Caleb, (affected with ed) was probably in grade school at the time. (He’s now 19) Lee talked openly about his dental procedures, and I remember having hope for Caleb’s future after seeing how well adjusted and confident this young man was. My heart goes out to his sweet family. I will be praying for their comfort during this difficult time.

  3. 3
    Jann on February 2, 2018

    MaryKay. This is beautiful. I feel as I know Lee and how special he was. I will pray for his family. Wonderful memories they have to live their lives by.

  4. 4
    Ivette on February 3, 2018

    I am praying for the family, May God give you strength
    I saw Lee’s testimony on YouTube and I liked how he glorifies God

  5. 5
    Ray Shaffer on February 9, 2018

    I am so sorry for the loss, folks…

  6. 6
    Jennifer Hagler on March 14, 2018

    Is it possible to do anything for his family? Is there any sort of fund set up for the kids?

    1. 7
      Jodi Edgar Reinhardt on March 15, 2018

      Hi, Jennifer. The family set up this: https://www.gofundme.com/kj4qju-rachel-goggin-burt. Thanks for asking. Jodi, NFED Director, Marketing and Communications

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