Charlie Richter was a poster child for the National Foundation for Ectodermal Dysplasia in the 1980s, with his pale skin, bald head, flat nose and kid-size dentures.
What the images didn’t show was the most serious symptom of his genetic disorder: The inability to sweat.
Charlie’s mother, Mary Kaye, sprayed him with water, traveled with cold drinks and took other steps to keep him cool. It was hard to play baseball in the hot summer or basketball on a court that needed to be kept dry, but soccer was OK.
“I could be soaking wet on a soccer field, and nobody cared or even knew the difference,” Charlie said. “Now if it got too hot, that could be a problem.”
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Charlie earned the nickname “Boo” as a toddler because he looked like a little ghost, and a few kids teased him in school. But he got love and support from people involved in the foundation, which his mother created from home in 1981.
Charlie also feels he benefited from growing up in the tiny town of Summerfield.
“I knew everybody,” he said. “When you have a strong group of friends who go from kindergarten through high school together, you tend to stick up for each other.”
Diagnosed as a baby
Ectodermal dysplasia is an umbrella term for a group of disorders caused by mutated genes. Defects related to hair, nails, teeth, skin and sweat glands can be mild or severe.
Charlie was diagnosed with the most common type, X-linked hypohidrotic, as a baby, although information was scarce. Mary Kaye and her husband, Norman, worked to keep to his childhood as normal and happy as possible. They didn’t know what the future held.
Would he go to college? Work a job? Get married? Have children? The answer to all those questions turned out to be “yes.”
Charlie, now 38, is a Southern Illinois University Carbondale graduate with a degree in agricultural technology. He farms with his father and brother, Mike, and lives with his wife, Bethany, daughter Charley, 4, and step-daughter Kylie, 9.
“He’s really a very well-adjusted young man,” said Mary Kaye, 71. “He doesn’t take himself too seriously. He always has a reason to joke, and he really is a very caring individual.”
Charlie has dental implants to supplement his two natural teeth. His bald head now is a fashion statement.
The Richters grow corn and soybeans. Charlie can do the outdoor work, mainly because tractors and other modern farm equipment have air-conditioned cabs. He schedules other hot chores in the cool mornings and evenings.
Charlie still is heavily involved with the foundation, now based in Fairview Heights, attending conferences and mentoring children with ectodermal dysplasia.
“He’s always willing to help us with educating others about the condition, being a spokesperson in the media or talking to a distressed mother about what she can expect for her child,” said Jodi Edgar Reinhardt, director of marketing and communications for the foundation. “He always says ‘yes.’”
The beauty of it is that other families and other kids (with ectodermal dysplasia) see how things have worked out for him, and it gives them confidence. They realize that there’s no reason they shouldn’t pursue their dreams, too.
Mary Kaye Richter on son Charlie’s success
Starting a family
Bethany is 10 years younger than Charlie, so they didn’t attend Summerfield Grade School or Lebanon High School at the same time, but she remembers folding brochures with his photo on them and stuffing envelopes for the foundation.
In 2010, Charlie caught her eye at a retirement party and began stopping by Buffalo Wild Wings in O’Fallon, where she worked.
“I thought he was cute,” said Bethany, 28, now a hair stylist. “I knew there was something different, but I didn’t care. I’m just not that kind of a person. It’s not about what a person looks like.
“He was a nice guy, and we had good conversations. We had a lot in common. We both loved Cardinals games. He was always polite. He’d say ‘please’ and ‘thank you.’”
It was during a July float trip that Bethany first saw Charlie get overheated. After a long ride in a non-air-conditioned bus, he made a beeline for the river and jumped in while everyone else was loading rafts. That solved the problem instantly.
The couple got married in 2012. A geneticist gave them the facts on having children: A baby boy wouldn’t be affected by ectodermal dysplasia. A baby girl would be a carrier.
“I wasn’t going to not have kids because they might have this condition,” Charlie said. “I always liked kids, and I was kind of a big kid myself. I knew I would enjoy being a dad.”
Little Charley carries her father’s mutated gene, but she seems to be largely symptom-free with a full head of blond hair and functioning sweat glands. One tooth is missing.
The toddler is the apple of Charlie’s eye. He also has developed a close relationship with Kylie.
“It really doesn’t matter to me that he has (the disorder),” she said, cuddling with him on the couch at home. “I just think of him as a normal person, and I can’t hardly tell that Charley has it.”
I wasn’t going to not have kids because they might have (ectodermal dysplasia). I always liked kids, and I was kind of a big kid myself. I knew I would enjoy being a dad.
Charlie Richter on becoming a father
Hope for families
Families affected by X-linked hypohidrotic ectodermal dysplasia got good news last month from a German study. Researchers had injected a protein known as Ectodysplasin-A1 into the amniotic fluid of a woman pregnant with twin boys.
The woman is a carrier of the mutated gene, so she passed it onto the babies. But now they seem to be developing normal sweat glands and a promising number of tooth buds.
“It’s a significant finding because it gives hope to all of our families that this could lead to a treatment,” Jodie said. “But it will take more study and more time to know for sure.”
In the meantime, the Richters are keeping busy with work, school, vacations and other activities. They have two dogs and three cats.
On weekends, they go to Mary Kaye and Norman’s farm, just down Summerfield Road, to ride bikes and four-wheelers, play with a new puppy and feed chickens and ducks.
Charlie and Bethany are looking forward to baseball season. The family also plans to attend the foundation’s annual conference in Virginia this summer.
“I’m so happy with the way Charlie turned out,” his mother said. “And the beauty of it is that other families and other kids see how things have worked out for him, and it gives them confidence. They realize that there’s no reason they shouldn’t pursue their dreams, too.”