By Dee Dee Olsen

Olsens 2014
The Olsen Family in Washington DC in 2014

I have led a most beautiful life. I have been graced by God with loving parents, devoted sisters, brothers-in-law, six incredible nieces and nephews, treasured friends and a husband who embodies strength, hard work and consideration.  We brought three little people into this world. They breathed new dimensions of love and life and beauty into my existence. I’m sure many of you can say very much the same exact thing.

DeeDee & Jade & Katrina
NFED Family Conference in Colorado Springs, CO in 2015

I have been over a great number of bumps and through quite a few valleys as well. I also went through a time in my life when I was afraid. I’m not describing the fear that comes from a bump in the night. I mean petrified to the point of being sick to your stomach.  A fear so powerful you feel yourself losing proper perspective of the actual size of yourself. Fear that makes you feel tiny and alone and dark. The type of fear that only accompanies the horrors of possibly losing a child.

I’m extremely fortunate that that fear was very short lived. I did not lose my little baby girl.  She was diagnosed as having Goltz syndrome, one of the ectodermal dysplasias.  She was going to be ok. She was not going to die; but I didn’t know that in that moment.  There was no greater scare in my entire life. Nothing that has ever even come remotely close. It was a darkness I will never forget.

Jade & Karina Olsen
Jade & Karina (Sister) at the NFED Family Conference in Richmond, VA in 2009

There have been countless references and quotes even as far back as in the Bible that describe the contradictory yet essential nature between light and darkness. My darkest moments being those when I was afraid for our precious daughter, Jade. The light in this dark period came in the form of the NFED.  I sobbed right through my very first Family Conference. I was so overwhelmed with joy and relief and swells of emotion.

DeeDee and Jade & Friends
NFED Family Conference 2014 in Columbus, OH

I have met so many families at the NFED Family Conference. So many happy children. So many courageous mommies. So many strong dads. I met Miss Mary Kaye Richter, our fearless leader.  And a dedicated, loving staff and advisory council that committed their lives to changing the lives of the families they served. I found it hard to believe that such an organization existed. An entire community! In fact, another family.

I volunteer my time and I raise funds because I want to be part of that light. I want to share that goodness with others. Whether I serve as a Family Liaison for the NFED, or host an event to raise funds or simply sit behind a desk at family conference and sell tee shirts. I want to do my part.

I want to try and pay back the good that was given to me in my darkest hour.  If you have ever been touched by the NFED, I implore you to pay it forward. To do unto others what has been done for you.  In any way big or small. Pay it forward. Share the light.

Editor’s Note:  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 .

You may also like:

Sweat It Out: The Duke Family’s Journey

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Volunteering for the NFED is My Opportunity to Give Back

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5 comments on “Pay it forward! Share the Light!”

  1. 1
    When Life throws you a Lemon, make Lemonade! | National Foundation for Ectodermal Dysplasias on November 17, 2015

    […] Pay it forward! Share the Light! […]

  2. 2
    Debbie on November 24, 2015

    I would like to help parents in Canada, in the Alberta area or via on the phone, who have had kids diagnosed with a rare ED. Or not yet known. My son was diagnosed with ED when he was 3 month old. He also had stridors , (high pitch crow pitch sound-loss of breath) that he would stop breathing at any time and we where not sure what was going on. We spent may of hours at the ACH in Calgary, AB. After time he was put on a bi-pap at the age of 12 months of age and is still on it at 17.5 years old. We did not find out to what degree or what the diagnosis of the ED was still he was 12 years old. After seeing multiple DR. at the ACH in Calgary they were still not sure what was going on with my baby. We were told that if they take his tonsils out that his stridors would stop him from breathing. We had the tonsils taken out and that did not help him, we still had the same problem. We had to keep him upright from the time he was born till he was over the age of 3 years old. If I could only help and support any parent that was going thru anything that I was going thru the same thing. I would do it, as I had no-one that I could talk to and could not find out any information about what was going on with him. You also have a lot to do with the school system which is a lot of work in to do through out is on.

  3. 3
    Jodi Edgar Reinhardt on February 1, 2016

    Hi, Debbie. Thank you for your note and sharing your experience with your son. I have not heard of associations between stridors and ectodermal dysplasia. Did your doctors ever say if they were two separate conditions? Just curious.

    If you have not registered with us at the National Foundation for Ectodermal Dysplasias, I encourage you to do so here: https://support.nfed.org/JustDiagnosed. We have information and support for you.

    Also, are you familiar with the Canadian Ectodermal Dysplasia Syndromes Association? You can find them at http://www.ectodermaldysplasia.ca/

    You are right in that educating schools and supporting one another as parents is the name of the game. Thank you for your offer to help. I hope that you will reach out and complete the form so we can connect with you further.

    Jodi Edgar Reinhardt
    Director of Marketing and Communications
    National Foundation for Ectodermal Dysplasias

  4. 4
    My Life’s Calling! | National Foundation for Ectodermal Dysplasias on February 16, 2016

    […] Pay it forward! Share the Light! […]

  5. 5
    We are Family! My Brothers, Sisters and Me! | National Foundation for Ectodermal Dysplasias on April 29, 2016

    […] Pay It Forward! Share the Light! […]

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