By Jamie Duke
I learned about hypohydriotic ectodermal dysplasia over two years ago when my son, Nicholas, was diagnosed with XLHED. I knew he couldn’t sweat, but I didn’t truly know and understand until he asked me why my skin was wet after I came back from a run. That hit me hard.
I looked on the NFED webpage and learned that some families were having runs…Don’t Sweat It Runs. I could do this; my new found passion was to help my son and others with this same disorder. I was going to sweat for Nick because he cannot.
My journey began as an organizer of a Sweat It Out race. How difficult could this be? I run, I know people that run and I have participated in 5K runs. I picked a date and made a few calls, but it never happened. My planned race day had come and gone.
I felt like I failed my son. I was not going to let him down and I started my planning again. I picked June 6, 2015. It would be hot enough to make the runners sweat. They could sweat for my son and others affected by ectodermal dysplasias.
One year earlier, I started to move forward again with my plans for Sweat It Out! The people at NFED were very excited and encouraging. They sent me information and tips to help get this event off the ground. I came across many personal hurdles. I doubted my ability to carry this event out. I started to ask around for volunteers and interest in our event, the response was overwhelming.
I mapped out a course in the Old Woodlands neighborhood. It was time to get it approved by the city and certified thru USTAF. Certification was necessary to attract the serious runners. The process seemed to take a long time. I didn’t hear back from the city so I assumed all was well. I had to get approval from the Home Owner Association in the neighborhood. A lot of paperwork and permits had to be completed before anything could be planned. City parade permit, park permits, approvals from neighborhoods, sponsorship letters, it was becoming overwhelming! I sat idle for a few months wondering if this was possible.
Nicholas was going thru the process of getting his dentures. It was so surreal; my 4-year-old had to have dentures. I thought “This is insane! How is he ever going to get used to this routine? How was he going to put dentures in his mouth?”
I was not thinking about my plans for the Sweat It Out event at all. The holidays were approaching and I still looked at my Sweat It Out bag with much doubt. I had not heard back from the City, park or the race certification people. I told myself that I would get things rolling again in January. Soon, it was February and still no word. Finally, I made the decision that I was in over my head and that I would let someone else coordinate a 5K to raise awareness for the NFED and ectodermal dysplasias.
Another month passed and I couldn’t get this run out of my mind. I called Ken Lowden and asked to get this race certified. I emphasized the urgency, as the event date was quickly approaching the event date quickly. He was more that eager to help me not only with certification, but with the run itself.
He was a pro at this race director thing and had a wealth of knowledge to share with me. I kept telling myself, “This is for Nicholas, you cannot give up. Failure is not an option!” I finally had the race certified but was still lacking a parade permit. I followed up with the City. I had the course certified, the approvals from the neighborhoods and the appropriate paperwork and money for the fees. This was a done deal!
I needed help. I called a young lady who had been recommended to me before the holidays. She had the experience to take this run to the end. We met for coffee on a Sunday morning. Shannon was an angel. She listened to Nicholas’ story and I showed her what I had already completed. The event date was less than three months away. There was plenty to do and Shannon was on top of everything.
We discussed the t-shirts first. We needed a design that was personal. Shannon recommended letting Nicholas draw a picture of a runner. Nicholas and his sitter sat down and came up with the most amazing drawing. We fell in love with the drawing. It became the logo for our Sweat It Out 5K. The signs, medals, t-shirts, Facebook and web page, and anything else used to advertise this event featured Nicholas’ drawing. He was so proud and so was I.
The hardest part of this event was raising money to pay for the 5K. I had to step out of my comfort zone and ask for help. I was welcomed with open arms. Once companies learned about Nicholas and HED, they were more than happy to donate. Before I knew it, water, bananas, coffee, food and cash were coming to us for this event. We had everything we needed.
Registration for our event was coordinated through Strictly Running. I would check it daily. At first, there were not many runners registered. I was getting a little nervous that this was going to be a flop. I kept pushing the run on Facebook and through our website. The number of runners kept growing and growing. Eventually, the number got so big that I had to ask for more water and food. I needed to order more shirts, bags and medals.
We needed something more – we had breakfast from Eggs Up Grill and Panera Bread. Drinks from Starbucks and fruit and water from local markets. I arranged to have a DJ to get the runners excited. The kids needed something fun so we arranged for a snow cone machine and a balloon man.
It was the evening before the run, packet pickup and last minute finishing touches. Nicholas and I helped with packet pick up. The runners enjoyed meeting the little boy they were running to support. We were so grateful for every person who came thru the door.
We arrived at the park at 4 a.m. the day of the run. There was still a lot to do to prepare for the 7 a.m. event. I was in awe of all the volunteers who showed up. Shannon was amazing; she maintained her cool and kept things moving. I on the other hand, was just in shock…it was beautiful, amazing, a dream come true.
Finally, it was race time. I was speechless, so Shannon announced the race and introduced Nicholas. He was so excited. He knew what this was about and he was so happy. It was 7 a.m. and Nicholas started the race…”On your mark, get set, GO!”
Two hundred people registered for our first ever Sweat It Out 5K. I look back at pictures and think about this amazing journey. In a way, it was like therapy for my family. We were able to talk about his disorder to others and they wanted to know more. It was validation for us that God gave us this child for a reason and that becomes clearer every day. We are his biggest fans and we will help him and encourage him to grow into a strong, confident, compassionate and empathetic man.
I am so grateful to the individuals who came out to support us in the amazing event. Shannon lriel, race director and friend, was instrumental in this event coming to fruition. The businesses and individuals who gave from their heart to help support this event. The runners, our new friends, hold a special place in our hearts; you came out and ran for our son.
Our second annual Sweat It Out 5K will be held at 7 a.m. on June 4, 2016 at Old Woodlands Park, Columbia, SC. We invite you to join us if you can.
Are you interested in hosting a fundraiser to benefit the NFED? Contact Seth Ferris, NFED Family Fundraising Coordinator, at firstname.lastname@example.org or call the office at NFED 618-566-2020 to start planning your fundraiser. You can also learn more on our website .
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