At 9 years old, Kerri Wert weighed 150. At 12 she was up to 200.
Her mother, Lisa, of Kansas City, Mo., watched the transformation. She didn’t just watch, though. She counted Kerri’s calories. She broiled, boiled and grilled. She padlocked the refrigerator and the kitchen cabinets.
In her late teens Kerri reached 317 pounds, her size all the more remarkable–frightening, really–on just a 5-foot frame.
In a society stuck on body image, people like Kerri Wert accumulate scorn as quickly as pounds–the sidelong glances, the wisecracks, the hurtful chuckles. Kerri has a genetic disorder known as Prader-Willi syndrome, which means she suffers from, among other things, an insatiable appetite.
Lisa Wert recalls the day she first heard Kerri’s diagnosis. Her daughter was 4.
“They actually put a name to it,” Lisa Wert said. “I was scared. I thought, `How can she ever go out into the world by herself?’ “
People with Prader-Willi syndrome generally are missing a piece of chromosome 15, causing a malfunction of the hypothalamus in the brain, and are obsessed with food. Even more, their metabolisms are exceedingly slow, they’re short in stature and their muscle tone is practically non-existent, making exercise difficult and unpalatable.
People with the syndrome have some degree of mental or learning disability. The disorder doesn’t run in families. It affects one in about 12,000 newborns and occurs in both sexes and all races. The syndrome is diagnosed only after birth, but some mothers of Prader-Willi babies report lack of fetal movement during pregnancy.
The Prader-Willi Syndrome Association wants to increase attention and attract additional research dollars, so the syndrome becomes as well known publicly and scientifically as disorders such as Down syndrome and muscular dystrophy.
It was a generation ago, in 1956, that three Swiss doctors first described the disorder, which carries two of the doctors’ names. About that time, Rose Mary Bell, of Kansas City, Mo., gave birth to her sixth and last child, Robert, who is now 41.
Robert wasn’t diagnosed as having Prader-Willi syndrome until his 20s, Bell said. The intervening years held much confusion and frustration for Bell. Why didn’t he walk until he was 2 years old? Why did he start gaining so much weight at 5?
Even so, Robert is a Prader-Willi success story, one of the few adults with the syndrome in the area who are able to live independently, specialists say.
For Lisa Wert, Kerri’s diagnosis came much earlier, at age 4. Until then doctors had blamed her developmental problems on her being more than two months premature, Wert said. Soon, though, she discovered what she was in for.
The food obsession became progressively worse at 5, she said.
“Everything had to be locked away,” Wert said. “I know that sounds far-fetched. But if food is in their vision, there’s going to be a problem. You have to be a total detective all the time. You have to watch them.”
Wert tried to place groceries on the highest shelves, thinking Kerri couldn’t get to them. But children with Prader-Willi can be amazingly clever at finding and hiding food.
“She would do these death-defying acts to get to food,” her mother said.
Wert would find pans she’d been missing hidden in Kerri’s room after Kerri had sneaked the leftovers. Kerri would try to take food off classmates’ trays in the school lunchroom. Her mother caught Kerri stealing money out of her wallet–stealing is often a problem with Prader-Willi youngsters–to buy food when she could.
Locks and strict control over her diet worked with Kerri but reasoning didn’t.
“When it came to food, there was really no understanding,” Wert said.
Such control, especially an extremely low-calorie diet, is essential to ward off obesity. But it’s also difficult for parents to maintain, said Heinemann, who with her husband started the Missouri chapter of the Prader-Willi association.
At 21, Kerri Wert lives in a group home called “Southern Road” with 11 other men and women with Prader-Willi. Open Options Inc., a non-profit corporation, opened the home in 1987. The home has a 24-hour staff that monitors food and medicine for the residents and provides counseling and social activities.
Kerri has dropped from 317 pounds to 147 in three years. Although she graduated from Central High School, her mother said Kerri’s behavior is close to that of an 8- or 10-year-old. She works at a sheltered workshop packaging hospital kits.
Temper tantrums and behavior problems, typical of the syndrome, sometimes occur at the group home, Wert said. Kerri, too, can get hysterical from time to time, demanding to come home, but her mother has learned to expect such episodes. And Kerri has matured, she said, with a stronger sense of responsibility.
“She’s living the most adult life she can live,” Wert said. “It’s wonderful for her.”
