It was a rainy but perfect day at a bed and breakfast in Vermont in 2006. Seventy people gathered to watch two people they love get married.

“I have the privilege of announcing for the first time, ‘Mr. and Mrs. Weirdo and Goofball’.”

No, it wasn’t the typical pronouncement at a wedding. No, it wasn’t the officiant playing a prank. But, it was the perfect way for Sarah and Everett Hamilton to begin their married life.

Those are the affectionate names this couple uses to refer to one another. She calls him Weirdo. He calls her Goofball.

“Everett would just do these weird things and his friends would say, ‘That sounds like him’,” Sarah said. “So, I started calling him weirdo. Some days, I’m just as weird! I always laugh at his jokes.”

Sarah says she’s always loved the way Everett carries himself.

Sarah and Everett on their wedding day
Goofball and Weirdo on their wedding day.

“Everett was loved at worked and had so many friends. I knew I could have kids with him because of his confidence. He has never let ectodermal dysplasia stop him.”

The two met at work 18 years ago. Sarah trained him on satellites for six months at Goddard Space Center.

“The joke is that I’m still training him!” she laughed.

For two years, they were just coworkers at the National Aeronautics and Space Administration (NASA). Then, Everett left for another job. It took a while for the duo to reconnect but they kept in touch. They would get together with friends and play poker. Then, Everett decided to take a temporary assignment – in Korea.

Soon, they were emailing daily. When Everett was due to return home, Sarah emailed him and asked him out on a date. He said, yes, and they met for dinner at a Mexican restaurant.

“I was nervous. What would we talk about if we couldn’t talk about work? But the conversation flowed freely,” Sarah said.

When Everett moved back, he was living in north Virginia while Sarah was 60 miles away, living in Maryland. But the distance couldn’t keep Weirdo and Goofball apart. He proposed to her in 2005 and they married the next year.

The duo were coworkers and friends before becoming Mr. and Mrs.

Growing up with x-linked hypohidrotic ectodermal dysplasia (XLHED), Everett never imagined that someone would marry him and want to have kids.  He went on dates but just thought he would never get married. Sarah said there was just something about Everett that attracted her to him.

The Hamiltons enjoy camping and hiking.

“We were like-minded, both active. All relationships take work,” Sarah said.

She was well aware that Everett had a rare condition that could be passed on to his children.

“I knew he had ectodermal dysplasia from when we first worked together. He let people know about his ectodermal dysplasia and his nut allergy. When we started dating, he reminded me that if we got serious, this could affect our kids,” Sarah said.

The Hamilton enjoy visiting the beach.
The family packs what they need to stay cool for their active lifestyle.

“At first, I didn’t want our kids to have to endure what Everett went through as a kid. He can’t sweat, had missing teeth and many allergies. But he has so many friends, people who take care of him. His friends would take buckets and pour water on him to help cool him down. I realized that he would be a good example to the kids. I knew I could do this. It was livable.”

The Hamiltons have two daughters, Addison and Hazel. Both are XLHED carriers. They aren’t the only family members who are affected. Everett’s mom and her identical twin were both diagnosed when Everett was born.

Addison
Addison likes to play soccer.

Addison, 5, is the least affected, according to her mom. She has 19 baby teeth which are conical shaped and has 15-16 adult teeth. She also has numerous food allergies and asthma, like her dad. And this soccer player does overheat easily as well.

Hazel
Hazel has more issues with swallowing due to her dry mouth and only having one tooth.

Hazel, 4, has patchy hair, one tooth, and reflux issues. Luckily, she doesn’t have any allergies or asthma. Mom says she’s stubborn and doesn’t always like to be cooled down. She has more chewing issues because of her lack of teeth and doesn’t like to chew her food.

While Everett often had pneumonia as a child, the girls have not had that.

Besides family, Sarah had never met anyone else affected by the condition until she attended the National Foundation for Ectodermal Dysplasias Family Conference this past July in Falls Church, Va.

“I only regret not going to a Family Conference before having kids so I would have been better prepared. I wouldn’t have changed my desire to have a family. I learned that the dry mouth issues the girls have and the allergies were a part of the XLHED.”

When it comes to parenting and managing ectodermal dysplasia, Sarah and Everett are on the same page.

Hazel, Everett and Addison
“We tell them they are like daddy.”

“While both girls have ectodermal dysplasia, they are affected differently. They are individuals. The girls don’t see themselves as different. We tell them like it is. We tell them they are like daddy,” Sarah said.

“We still live a normal life. It’s not complicated. Just pack what you need to stay cool. Ectodermal dysplasia is our norm. We don’t let it stop us.”

Today, Sarah is a mission planner for two NASA Deep Space Missions and Everett is a flight director for weather satellite operations for the National Oceanic and Atmospheric Administration (NOAA). They both still love doing things outdoors.

Everett may not be able to sweat but it doesn’t stop him from riding 100 miles on his bike with Sarah.

“I don’t have too many concerns for Everett in terms of ectodermal dysplasia,” Sarah said. “Except maybe when he wants to golf on a code red day in Maryland! But, we bike 100 miles, we camp, we vacation. We just don’t do it June. We will do it in October.”

Sarah said she wanted to share their story because of the response she got at the Family Conference.

“I never thought of it as a big deal asking Everett out on that first date knowing he had XLHED. But being at the (Family) Conference, to many there, the next generation of kids, it is a big deal. Just to know that it is possible to meet someone and have a family. So, Ev and I wanted to volunteer to tell his/our story,” Sarah said.

And that’s the story of Mr. and Mrs. Weirdo and Goofball. A love story that has only just begun.

The Hamiltons enjoyed bringing their whole family to the NFED Family Conference in Falls Church in July.

14 comments on “Mr. and Mrs. Weirdo and Goofball”

  1. 1
    Dwight Franklin on November 11, 2017

    What a wonderful story! My granddaughter has ectodermal dysplasia, and it is nice to see a success story, because I can see that she can look forward to a happy life. Thank you for your story!

  2. 2
    julie claeys on November 13, 2017

    Love this inspiring story of love. I hope one day my son finds a kind and understanding gal whom supports his HED condition. Confidence in one self with a rare condition is admirable.

  3. 3
    Janet on November 13, 2017

    Wonderful inspiring story. Thank you.

  4. 4
    Vinesh on November 13, 2017

    This is such an inspirational story.
    I am affected by HED and don’t sweat. Until last year I was prepared not to marry and have kids but this year I believe I can get married too and I may get married this December too. The bride never heard about this disease so she doesn’t know much and since it is winter so she can’t notice easily either. Based on her nature, I have a strong belief that she will support me in all situations. Your story has made me even stronger. Thank you for sharing the story.
    I am excited and nervous 🙂

    1. 5
      Everett Hamilton on November 13, 2017

      Be yourself!! All things will fall in line if you are true to yourself and her! Good luck!!

  5. 6
    Mary K Richter on November 13, 2017

    What an absolutely delightful story. So glad you found each other and I’d say our nation’s space program is that much better because of the two of you. Bravo to you all!

  6. 7
    Paul Burbridge on November 13, 2017

    I commend you Mrs. Hamilton. Men like myself and your husband usually accept the fact that we were destined for a solitary life. To hear a report that one of us got hitched is an encouraging testimony. Thank you for sharing your thoughts and hopefully I can meet your husband at the next conference. Paul from California

  7. 8
    Becky Yost on November 13, 2017

    Hey Ev, I remember seeing you growing up as a small tot. There were so many scary times. It is so heart warming to read your story and that you have had great accomplishments in your life. You are so fortunate to find such a loving wife as Sarah. Your family is beautiful.

  8. 9
    Brenda Knight on November 13, 2017

    Well, ‘Wierdo’ and ‘Goofball’ are friends of my husband and me. They and their girls are wonderful people! They are great outdoors people and are willing to tackle anything — they let nothing stop them from enjoying life. They are an inspiration to all people! My heroes!

  9. 10
    Becky Wells on November 14, 2017

    It has been a blessing to call Everett and his family my family. I have always thought that Everett was, and is one, of the strongest and bravest people I know. Love to them all.

  10. 11
    Sally Comstock on November 14, 2017

    Thank you for this uplifting story. My grandson has HED and living in the South cooling is a challenge in the Summer. In the Fall respiratory issues become the focus. Let me just say there are challenges but the rewards far outweigh the challenges.

  11. 12
    Mary hamilton on November 14, 2017

    Ev and Sarah. What a delightful and inspiring story that I have known all along. You inspire me and those all around you. I’m proud to be your mother MOM

  12. 13
    Denise Potter on November 14, 2017

    Love your story and your wonderful family! Your story is inspiring and brings warm fuzzies to my heart! We are proud to call you friends! Thank you for sharing your story and giving others inspiration and hope! Miss you all! Love The Potter’s

  13. 14
    Linda McDougall on November 14, 2017

    My 40-year-old landlord has ectodermal dysplasia and the world’s most loving and beautiful psychiatrist wife! They’re an inspiring couple – and he’s one of the most charming, compassionate and sensitive, not to mention handsome, men I’ve ever met. His great sense of humour surely comes from having passed through those difficult years of being “different”. Loved by everyone he knows, as he carries a kind of spiritual awareness of life like a light around him.

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