Clinic for Special Children

Established by Dr. D. Holmes Morton, The Clinic for Special Children is a primary pediatric care and gene research clinic located in Strasburg, Pennsylvania. The facility specializes in genetic problems of the plain sects, such as the Amish and Old Order Mennonites.

The clinic treats about 1,200 active patients for over 150 genetic disorders or syndromes such as glutaric aciduria (GA1), maple syrup urine disease (MSUD), Crigler-Najjar syndrome (CNS), and medium-chain acyl-CoA dehydrogenase deficiency (MCADD).[1] The children receiving treatment at the clinic are not exclusively Amish or Old Order Mennonites; about 15% of the children come from other backgrounds, including Africa, Asia, and South America. About 75% of the children seen by the Clinic are considered treatable— Many, through techniques developed at the center. Of that 75%, one third are considered highly treatable. CSC staff are co-authors on nearly 100 scientific papers.[2]

Amish and genetics

The vast majority of the nearly 200,000 American Amish are descended from about two hundred eighteenth-century forebears. Consisting mostly of immigrants who moved from the lower Rhine valley, the German Palatinate and Alsace in the 18th century, the Amish do not marry outside the faith. Although there have been some converts from the outside "English" world, their gene pool is more shallow than that of the average person. Some Amish are afflicted by heritable genetic disorders, including dwarfism (Ellis-van Creveld syndrome), and are also distinguished by the highest incidence of twins in a known human population, various metabolic disorders, and unusual distribution of blood types. Since almost all of the current Amish descend primarily from the aforementioned two hundred forebears, some genetic disorders exist because of inbreeding in more isolated districts. However, Amish do not represent a single closed community, but rather a collection of different demes or genetically closed communities.[3] Some of these disorders are quite rare, or even unique, and they are serious enough that they increase the mortality rate among Amish children. The majority of the Amish accept these as "Gottes Wille" (God's will). Typically, Amish are willing to participate in studies of genetic diseases while rejecting any use of genetic tests prior to marriage to prevent these disorders or to discover genetic disorders in unborn children.

There is an increasing consciousness among the Amish of the advantages of exogamy. A common bloodline in one community will often be absent in another, and genetic disorders can be avoided by choosing spouses from unrelated communities. For example, the founding families of the Lancaster County Amish are unrelated to the founders of the Perth County Amish community in Canada.

Treating genetic problems is the mission of the Clinic, which has developed effective treatments for such diseases as maple syrup urine disease, a disease which previously was fatal. The clinic has been enthusiastically embraced by most Amish and has contributed to a change in the community's response to departing parents: unlike in the past, parents who feel it necessary to care properly for their children are only rarely placed under the ban.

History

In the 1980s, Morton took a special interest in Amish children with rare metabolic diseases. Morton was a pediatrician at the Children's Hospital of Philadelphia when he first became aware of their special problems. In 1989, CSC bought untillable land from an Amish farmer and held a barn raising. The result was a community care center providing care, counseling, and genetic testing for disorders unique to the Amish and Old Order Mennonite populations.

While Morton originally did most of the biochemical testing himself, CSC now operates an on-site laboratory which provides various biochemical and genetic assays, many specific to disorders commonly seen in the Plain communities.[4]

Amish and Mennonites near Middlefield, Ohio, raised funds to open the nonprofit Deutsch Center for Special Needs Children, headed by Dr. Heng Wang, who studied and worked with Morton. DDC is registered as a 501(c)(3) nonprofit organization. In 1999 DDC began operating and currently provides primary pediatric care and laboratory services.

Nearby Plain communities hold several benefit auctions for CSC each year, raising sufficient funds to cover about a third of the clinic's operating costs. Amish and Mennonite families donate quilts, furniture, baked goods, and other items to the sale. The clinic is a registered 501(c)(3) nonprofit charity.

In early 2009, the LaGrange County, Indiana Amish community began the process of establishing a Community Health Clinic for genetic research and treatment of rare disorders in the Midwest. CHC is to be modeled after and will be collaborating with The Clinic for Special Children On Sept. 25, 2009 a fundraiser auction was organized at Shipshewana, Indiana, bringing in excess of $180,000 to the CHC fund. CHC is registered as a 501(c)(3) nonprofit organization. CHC began providing clinical services in 2013.

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External links

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