Nestled among the maple and beech trees off a quiet Lancaster County road stands an unassuming Amish farmhouse. While its timber-framed structure may not look out of place in its pastoral surroundings, what’s happening within its walls is. Here, at the Clinic for Special Children in Strasburg, Pennsylvania, a kind of medical revolution is taking place. Established in 1990, the clinic has not only become a primary center for the research of rare genetic mutations and disorders but one of the few places in the United States that seeks to treat them.
The center's existence in Lancaster County has everything to do with the area’s predominant Anabaptist—Old Order Amish and Mennonite—populations. Most Old Order Anabaptists, also known as Plain, lead a bucolic existence stereotypically known for their aversion to modern technologies, such as electricity, and a strict conservative dress code that can dictate the length of a woman’s bonnet strings or the width of the band on a man’s straw hat. Anabaptists have traditionally held jobs as farmers, although rising real estate prices have put more and more Anabaptists in metal shops, on construction sites, and in shops selling handmade goods.
What makes the Old Order Amish and Mennonites of Lancaster County so rich for medical researchers is that the population can trace their genetic stock to a handful of founding members. These founders, who came over from Europe to Pennsylvania in the 18th century, formed the genetic foundation that now makes up the greater Amish and Mennonite populations of Lancaster. And because Plain people rarely marry or have children outside of their communities they have carried with them the founder’s rare genetic disorders.
These ailments, such as glutaric aciduria type 1 (GA1) and Maple Syrup Urine Disease (MSUD) usually manifest themselves within the first few years of childhood and are often associated with severe brain damage or death. Over the years, however, and with the support of Lancaster’s Anabaptist community, the doctors and researchers at the Clinic for Special Children have been able to use their research to mitigate many of these once deadly disorders. The clinic receives no financial support from the federal or state government and Amish specifically do not participate in public or private healthcare. While these disorders are deeply encoded in the sects’ members—which makes the community so ideal for productive medical research—they also exist throughout the world. Any discoveries or treatments developed at the Clinic for Special Children have life-changing global application.
The objective of this project is not necessarily tell the story of the clinic, but rather to examine how their cutting-edge medical work and its Plain patients coexist and how that unique partnership has benefitted the global medical community. How is it that a population, so stereotypically adverse to technology, has embraced the center's work? Have they forgone some of their religious doctrines in order to do so? I will also explore how the community as a whole comes together to assist each other during medical hardships, pooling their financial and care resources for the greater good of their members' health, the innovative work of the clinic, and the health of the global community.