Amish face higher risk of genetic disorders

Local Amish support plans for a clinic to research and treat the disorders.
By MARALINE KUBIK
VINDICATOR STAFF WRITER
MIDDLEFIELD -- Genetic disorders in the Amish community are far more prevalent than in the community at large.
In Geauga County, nearly 50 percent of children with special needs and disabilities are Amish, even though the Amish account for only 12 percent of the population, said KC Henry Bergman, project director for Das Deutsch Center for Special Needs Children.
Higher occurrence: The Amish have a higher rate of certain inherited diseases because they maintain an insular community, often marrying distant relatives. Recessive genes passed from generation to generation thrive in the limited gene pool, increasing the risk and occurrence of genetic disorders, Bergman explained.
In one local family, all four of their children are severely disabled; in another family, three of seven children are affected and another one died; in yet another, one of nine is disabled and the list goes on, added JoAnn Leach, an early intervention specialist who coordinates medical treatment for children from birth to age 3 at the county's Metzenbaum Center.
Not every Amish family has disabled children, Leach said, but the Amish community is severely affected and wants help.
Leach took four families, worn out by countless trips to hospitals that provided excellent care but no answers, to the Clinic for Special Children in Lancaster County, which specializes in researching and treating genetic disorders prevalent among the Amish.
Specialized clinic: The Clinic for Special Children opened in 1991. Its founder, Dr. Holmes Morton, a pediatrician who specializes in biochemical disorders, has identified 32 disorders among his Amish patients, Bergman said.
In just five years, Morton developed beneficial treatment protocols for 80 percent of his Amish patients, Leach added, devising effective treatments for 20 percent of them and improving the quality of life for another 60 percent.
One of the major problems for families in Geauga and Trumbull counties is that there is no single health-care organization that compiles case histories and information about the illnesses, making it difficult to establish standard protocols for treatment, Leach explained.
After the four local families visited Morton's clinic, University Hospital Health Systems at Geauga Hospital suggested a similar clinic be established in Geauga County. The Amish community supports the idea and contributed the first $80,000 to the $1.8 million project, Leach reported. Amish churches made the initial contribution. Since then, several Amish families have made anonymous contributions, she said, "and they offered to do the work if we build a new building or remodel an existing one" to open Das Deutsch Center for Special Needs Children.
Involvement: Half of the members of the board of trustees are Amish, mostly mothers and fathers of disabled children, Leach continued. The Amish also have a lot of input into who will be hired to work at the clinic. Amish mothers with disabled children, along with the board of trustees, are interviewing all potential physicians, she said.
Das Deutsch Center will serve as a research center for genetic diseases as well as a diagnostic, treatment and education center, Leach said. "Our real goal is to provide families with information that will save the next generation."
Studying genetic disorders in a closed community allows the work to progress more quickly, she added, because there are few outside influences and members can accurately trace their family histories.
So far, some $450,000 has been raised for the project. Of the $1.8 million goal, $800,000 will go toward putting up or remodeling a building, Leach said, and the rest toward creating an endowment that will enable the non-profit center to operate for at least 10 years.
kubik@vindy.com