Jesse and Pat Wilkerson's dolls aid brittle bone disease research
Sales of homemade playthings help Osteogenesis Imperfecta Foundation
December 2008
By CAPPER'S editors
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GOOD CAUSE: Jesse Wilkerson, of Gardner, Kan., shows off two of the dolls he and his wife, Pat, create and sell.
– Courtesy of Santa Fe Trails Doll Shop
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Sturdy and old-fashioned, the dolls that Jesse and Pat Wilkerson create are a source of great pride for the Gardner, Kan., couple.
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Each of the handmade dolls the husband and wife make has a head of hair made with nearly two skeins of yarn. Each is packed so solidly with cotton that it can withstand the rigors of play, as well as a run through the washer and dryer. Each is individually signed upon completion.
Perhaps what makes these dolls most special, though, is that the sale of each one helps further research into a rare disease Jesse Wilkerson has lived with his whole life.
Brittle bones
Wilkerson, 76, was born with osteogenesis imperfecta – “OI,” for short. The genetic disorder causes bones to fracture easily, and Wilkerson estimates he’s suffered about 40 breaks during the course of his lifetime.
According to the Osteogenesis Imperfecta Foundation (www.OIF.com), the disease affects an estimated 25,000 to 50,000 people in the United States.
“OI is a genetic disorder characterized by fragile bones that break easily, so some people know it as brittle bone disease,” said Tracy Smith Hart, chief executive officer of the Gaithersburg, Md.-based foundation. “A person is born with this, and it affects them throughout their lifetime, no matter what severity they have.”
People born with Type I, which is usually a mild form of the disease, might only have a few breaks in their lives, she said, while those with a very severe form of the disease can experience hundreds. Other problems associated with the disease include muscle weakness, hearing loss, fatigue, brittle teeth and short stature.
Pat Wilkerson, 70, said her husband could break a bone just turning over in bed. “It’s not that bad anymore, but he could,” she said.
She shared the story of a tough patch her husband went through last winter, when he developed a bad cold.
“He started coughing really bad, and he had all this pain in his back,” she said. “We didn’t know what was going on.”
A hospital staff was just as puzzled.
“Finally, they did a CAT scan and bone scan,” she said, “and found out he had three fractured vertebrae, just from coughing.”
A month later, he fractured another vertebra getting into his car. That’s when he learned his coughing had also caused him to fracture his ribs.
“I don’t know how he lived through it all, really,” Pat Wilkerson said. “It was really bad.”
Tough years
Living with the disease has never been easy. Wilkerson, with two of his four siblings, inherited the disease from his father. He got the most fractures.