When Lori Torman`s daughter, Casey, was born four years ago, her doctors knew she was suffering from a disorder of some kind. They just had no idea what kind.
It took three months of testing and a visit to a geneticist to determine the problem: Goldenhar syndrome, a condition that causes ear, eye and other cranial and facial deformities. When she tried to learn more about the condition, though, Torman didn`t have much success.
”I tried to do some research on it and couldn`t find much on the syndrome,” the Darien resident recalls. ”I have yet to meet a pediatrician who`s familiar with Goldenhar syndrome.”
Casey`s problems included moderate hearing loss, a weak spine, shallow hips, ear deformities and an asymmetrical face. She also was born without one kidney. Torman has since learned that her daughter`s ailments are mild compared to some.
Casey attends preschool classes for the hearing impaired at Forest Road West School in La Grange Park.
”I`ve seen great progress with her because of their skills,” Torman said. And Casey hasn`t had any problems dealing with other children, she added.
Things may change as Casey gets older, Torman acknowledges. Plastic surgery is an option, if her daughter wants it.
Severe cases of the syndrome can include facial paralysis and moderate mental retardation, as well as serious facial deformities.
She also suspects that the condition is more common than some experts think. Torman cites statistics that say one out of every 3,500 babies is born with the syndrome, which was discovered in the early 1950s by a French physician named Goldenhar.
During the last four years, Torman has spent a lot of time looking for information about Goldenhar syndrome, trying to find other parents of children with the condition, and speaking with doctors-there are very few-who are researching the problem, she said.
In January, she took her crusade one step further and formed the Goldenhar Fund, a group aimed at increasing awareness of the syndrome and promoting medical research into a cause.
Torman`s first goal as director of the Goldenhar Fund is to raise money to produce a videotape for classmates of children with cranial and facial disorders.
The silent auction-dinner dance will begin at 7 p.m. at the Ashton Place, 341 W. 75th St., Willowbrook. Admission is $30. For more information, call Torman at 910-3939.
