YOU ARE HERE: LAT HomeCollections
(Page 2 of 2)

Insatiable Appetite Marks Rare, Shocking Illness : Prader-Willi Sufferers Can Eat Themselves to Death, but Help Is Often Hard to Find

March 27, 1986|DAVID WHARTON | Wharton is a Los Angeles free-lance writer

Finally a friend showed Menzer a magazine article written about Prader-Willi. It was, for the Menzers, both a relief and an awakening. At that point, Cal Menzer set out to find and organize other Prader-Willi families. Diebold recalled reading a newspaper article about Menzer's newly formed group in 1978.

"You don't know what a thrill it was," she said. "After years of fighting with doctors, people who didn't know what it was, didn't understand it. . . ."

William and Antoinette Campoy, of Studio City were also glad to find Menzer after their 8-year-old son, Christian, was diagnosed as suffering from Prader-Willi.

"It was gratifying to understand that we were not alone. We support each other," Antoinette Campoy said. "It's not something we wished on ourselves. We just have to learn to live with it."

The foundation has recently joined forces with the Prader-Willi Syndrome Assn., a nationwide group headquartered in Minnesota. Whereas the larger group has focused on medical research, the California foundation is setting its sights on raising money to open more homes for Prader-Willi sufferers in this state.

According to a survey Menzer conducted, there are 112 Prader-Willi sufferers in California who receive medical aid at state centers. Of those patients, 56 are in need of a group home. Many of those already institutionalized, Menzer said, need to be moved to homes in which the staff is trained to deal specifically with Prader-Willi.

Stephen Diebold was recently asked to leave a home in San Diego because he exhibited what the staff believed to be excessive violence. Helen Diebold said she believed that her son was not properly supervised.

"These kids have to have good homes that are staffed properly," she said. "They need to be handled and trained."

"I don't miss the staff there," said Stephen, who is relatively articulate and intelligent for a Prader-Willi sufferer. "They go hiring people who don't have credentials."

There is one Prader-Willi home in the Valley, run by the Dubnoff Center in North Hollywood. But that home holds only three teen-agers. Menzer said the foundation hopes to raise $100,000 to open another, larger home. The foundation has already garnered about $25,000 in donations and is planning a fund-raising golf tournament on April 25 in Chino. Antoinette Campoy is trying to organize a celebrity benefit show.

Meanwhile, Helen Diebold is searching for a new home for Stephen. Since he has been home, she has had to hire a daytime nurse who comes in for eight hours a day at $10 an hour. The state pays $3.65 an hour of that bill. And Stephen has several times raided the refrigerator at night. He has gained 35 pounds since coming home.

Cal Menzer also has problems with his son. Mark recently ran away from his home in El Monte. Menzer believes that his son needs psychiatric counseling, but the state funding for that part of his therapy ran out several months ago. So Menzer has been on the telephone to Sacramento.

"I'm going to yell and scream until I can get some help. But I'm tough. Other people aren't as aggressive," Menzer said. The group, he said "guides them and helps them. We'll tell them, 'This is what we did. Try this.' "

Los Angeles Times Articles