Nelsen Family

By Nancy Nelsen, Guest Blogger

We attended the National Foundation for Ectodermal Dysplasias (NFED) Family Conference during the summer of 2015 in Colorado Springs.  Neither of us, my husband, Karl and I, were prepared for the emotions that filled us as we listened to other families’ stories, and told our own. We felt supported, connected and blessed in countless ways.

When we are so fortunate, it is only right to do something to share our blessings, to give back. We left conference having pledged to do a walk sometime in the next year. As time went by, we put it off as lives are busy and schedules are hectic.

By April it was clear, it was too late to plan a walk for May, but my procrastination strengthened my resolve to get a walk on the calendar by September.  As we applied for insurance and permits for parks and started working on our personal narratives, we were asked, “Why are you doing this?”

At first, the answers were easy. We want to raise awareness for NFED and around ectodermal dysplasias. We want to build a strong community around our daughter and other kids like her. As we got closer to the event and the details came into focus the answers became more specific. We don’t want other families to have to worry about how to pay for their child’s dentures, implants, and/or medical procedures.  We don’t want families to feel alone. We don’t want our daughter to feel alone.

Raising money for the NFED will help families, will help us.  What surprised us most is – we weren’t alone. We were amazed and humbled by the outpouring of support and help which was showered on us.  Local friends and businesses offered to help. We posted notices on Facebook, we sent emails, we talked to our neighbors, our relatives and friends spread the word. As we started inviting people to our event, we told our story.  We educated people.

Our dream, in addition to helping people, is to equip our daughter to tell her story.  We want her to be open about her ectodermal dysplasia. It is part of who she is. Right now she is very happy with who she is.  We want her to stay that way.

We want her to be open about her story, so that when she comes across people/kids who are not educated, she can teach them. Her differences won’t be a tool mean kids can use against her, they are just a part of her. Anyone who knows her understands that her differences are not all of her.

Our event was one way to open ourselves to the amazing community around us.  More than 100 people paused in their busy lives on a Sunday morning to support the NFED. Many more supported monetarily, and many actually apologized that they had previous plans and would miss the event.

Karl was very emotional when he thanked our sponsors, participants, friends and volunteers.  Growing up as a child with ectodermal dysplasia who didn’t know anyone like him, he was overwhelmed by the turnout of people standing to support people like him. Families like us. The support was truly staggering.

We hope the money raised will make a difference in others lives, but the event definitely made a difference in our lives. It was a leap of faith to open ourselves and tell our story.  It paid us back tenfold.  Someday, when our daughter has a tough day, we can look back and remind her about all of the people who gave their time and money, who showed up, who support her, who care about her, just as she is.

(Nancy Nelsen is the wife of Karl Nelsen and mother of Abby, Andrew, and Sammi. Karl and Sammi are affected by ectodermal dysplasia. She also hosted the family’s first Don’t Sweat It Fun Walk/Run in Minnetonka, Minn.)

Editor’s Notes:

View pictures of the event which generated over $24,000 and great awareness. If you are interested in volunteering, creating awareness or holding a fundraiser, contact Lea Richardson or Seth Ferris or call 618-566-6871. You can also complete our volunteer application online.

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