After high school, she abandoned the agrarian life for a year to attend the University of Illinois, but she soon returned to marry another farmer, Norman Richter. The couple had a son, Michael, and a daughter, Sharon, while Ms. Richter ran a flower shop in her 20s. Her youngest son, Charley, was born in April 1978.
After his diagnosis in the fall of 1979, Ms. Richter felt helpless as she tried to find out more about his disorder.
“You might call a lot of places, and go a lot of places, but virtually no one could tell you anything other than ‘Well, I maybe saw one case 20 years ago’ or whatever,” Ms. Richter recalled in the 2021 interview. “When it came to really useful information about living and school and life span and education and all of those things that are critical to a parent, it wasn’t there.”
The first step was to find other people facing the same challenges. She reached out to more than 60 dental schools and associations and found out that the condition was not nearly as rare as imagined. But treatments were hard to come by.
At a minimum, her youngest son needed dentures — not only to eat but for aesthetic reasons, too. In addition to a lack of teeth, which could affect one’s jaw profile, people with ectodermal dysplasia tend to have a prominent forehead, thin lips and dark skin around the eyes. (The character actor Michael Berryman, who appeared with Jack Nicholson in “One Flew Over the Cuckoo’s Nest” in 1975 and starred in the 1977 horror film “The Hills Have Eyes,” is a rare example in the public eye.)
But even finding dentures proved a struggle. Back then, “the belief in the dental community was ‘Oh, they’ve got to be at least a teenager before we even start,’” Ms. Richter said in a video interview last year. “Well, if you wait until they’re a teenager, any damage that is going to be done to their psyche is going to be complete.”
She finally secured them when Charley was 3.
The boy then had a hard time playing outside during blazing Midwestern summers. So they improvised.
