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.
“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.
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.
“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.
“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, 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, 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.
“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.
“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.