By Chris and DeAnn Huxman
In 2001, our second son, Tyler, was born with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. We had never heard of EEC, had no information about it, and had no idea what the future would hold. We didn’t know where to turn or where to find information.
While searching the web for anything about EEC, we came across the National Foundation for Ectodermal Dysplasias (NFED). We stayed in contact with the NFED for the next couple years. In 2005, we noticed an NFED Family Conference was scheduled to be held in Kansas City, which was within driving distance, so we decided to attend.
Our first NFED Conference was a life-changing experience for Chris and I, as well as our son, Tyler, and our older son Ryan, who is not affected. When we arrived, we were greeted by name by the Executive Director at the time, Mary Kaye Richter – and we hadn’t ever met her before!
We soon found out the NFED Family Conference was definitely different in a very positive way. It is a national organization but has a local and “family” feel. Each person arriving at conference is not just a number or name on a tag. From the moment of arrival or contact, it is immediately evident that the people associated with the NFED care about each individual person!
This Conference was overwhelming to us because of the massive amounts of information we heard over just 2½ days. The information was presented by doctors who actually knew something about ectodermal dysplasias and EEC, unlike all the doctors we had seen in clinics previously. Instead of us having to educate them with our limited knowledge, they were educating us with new information and it was awesome!
We walked away from our first Conference knowing we would be returning yearly, feeling that we weren’t alone, and knowing we had just found a new “family” we had not known previously. Yes, our brains were overloaded, but each year that we return to Conference helps the information settle in and become a part of life.
In 2005, we were only able to meet two other people with EEC, Jack and Norma, who were full grown adults. We loved the interaction and instant friendship developed with Jack and Norma at Conference but were a little disappointed that Tyler wasn’t able to meet anyone closer to his age, another child. St. Louis in 2006 changed that for Tyler as he met five to 10 other children with EEC.
As parents, we met the Kelsos and found an instantaneous bond. Our friendship was formed immediately as we experience many similar things in life that others not living with EEC can’t understand completely. We have now attended 10 straight conferences. For the last seven, we have vacationed together with the Kelsos before or after Conference.
Our children call each other brother and sister and as mothers we’ve deemed ourselves as “sisters.” Without the NFED and EEC, we never would have met such dear friends. Although we specifically mentioned the Kelsos, there are other families that we feel very close to who we see only three days out of a year. It is wonderful to spend a few days experiencing life with others that know exactly what life looks like day in and day out.
At conference in 2007, Tyler met another EEC boy his age and they immediately became best friends. They see each other three days a year, but during those three days they are inseparable. The pictures of Tyler and Zemery together could be mistaken as brothers, so we just say they are “brothers from different mothers.”
It is always sad when they have to say farewell until next year. This last summer was the first summer they haven’t seen each other at conference in eight years and it was tough on both of them. They’ve created a bond that is strong and will last a lifetime. We are so grateful for their friendship.
From the first Conference we attended, we fell in love with the NFED and those who work for the organization. We wanted to get involved directly and help in any way possible. When the Family Liaison program started, I was asked to be a member to represent the central state region and jumped at the opportunity. What a wonderful way to share the passion and love I have for the NFED with others and share my story to help another family in a difficult situation.
It’s a great way to stay involved, be a part of conferences, and place myself in a position to talk to new families needing support. In August of 2008, we welcomed our fourth son, Grant, who was also born with EEC. Once again, this was not what we had envisioned for our lives, but the experiences and connections we’ve made through the NFED make it all manageable and wonderful.
Fundraisers are a huge source of funds for the NFED to keep going. For years, we wondered how to give back to the NFED since the organization had given so much to us. In 2011, we decided to host the Huxman Run 2 Sweat, a 1-mile fun run, 5K, and 10K fundraiser for the NFED.
Everyone kept telling us to do an event based on our interests and one that we would enjoy. We chose a run as we both enjoy running and knew many others who would be willing to participate in this type of event.
The first year far exceeded our expectations for participants and funds so we have continued the run yearly. The first four years we had the event in October, but as we are preparing for our 5th annual event, we are looking at a spring date instead.
We believe it is our responsibility to be actively involved in fundraising to guarantee that the NFED will still be around when our affected children are grown up and starting their families. This organization is vital for many people’s lives and needs to be around for generations to come. In addition to fundraising, educating and raising awareness for the NFED are important results of the Huxman Run 2 Sweat, which is why we continue to host this event.
These are some of the different ways we’ve become actively involved with the NFED. We attend Family Conferences, volunteer as a Family Liaison, working with the Family Conference Planning Committee, and host an annual fundraiser.
Our family has been touched by the NFED and believes in the importance of giving our time, resources, and support back to the organization that has impacted our lives immensely. We love the new “family” we’ve found with the NFED! I hope my story encourages you to volunteer for the NFED and/or hold a fundraiser to create awareness and funding. Try to “Make Your Mark.”
Editor’s Note: DeAnn is an NFED liaison, serving families in Kansas and Oklahoma and lives in Moundridge, Kan. with her husband, Chris, and sons, Ryan, Tyler, Andrew and Grant. Tyler and Grant are affected by EEC syndrome. Chris and Deann host the Huxman Global Run 2 Sweat fundraiser for the NFED.
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