At a clinic in a barn, doctors find cures for rare genetic diseases

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1 At a clinic in a barn, doctors find cures for rare genetic diseases By Philadelphia Inquirer, adapted by Newsela staff on Word Count 740 In this June 25, 2014, photo, young Mennonite girls gather at the health and safety clinic, which included measles, mumps and rubella vaccinations in Shiloh, Ohio. Photo: AP Photo/Tom E. Puskar STRASBURG, Pa. In 2001, Benjamin Glick was born into a Amish family in Pennsylvania. Just weeks after his birth, he developed a mysterious illness. He would vomit and pass out. He wouldn t eat and he lost weight. Over five difficult months, his parents took him to 12 doctors at six hospitals in the Philadelphia area. Nothing seemed to help. He was fading out, we were going to lose him, said his father, Amos Glick. It took a medical center in a Pennsylvania cornfield to save the boy. The center was called the Clinic for Special Children in Strasburg. It had an unusual specialty: treating Amish and Mennonite children with rare genetic disorders Recognizing Rare Diseases The Amish are a Christian community who live a traditional lifestyle. They immigrated from Europe in the 1700s. Amish Americans and Mennonites, a similar group, do not use electricity or other modern technology.

2 Most of the doctors that Benjamin Glick had seen were confused by his case. Doctors at the Clinic for Special Children in Strasburg, however, had seen similar symptoms in other children in the Amish and Mennonite communities. They discovered that Benjamin had a rare condition that made him allergic to milk-protein. They changed Benjamin's diet and his condition stabilized in a month. A big hospital may not have considered the medical history of Benjamin's community, according to Kevin Strauss, the clinic s medical director. The reason that Benjamin and children like him can be so difficult to treat is that they belong to a unique population. Doctors may not check for certain rare diseases in these children even though the diseases may be more common among Amish and Mennonite children. For generations, Amish and Mennonites have married only within their communities. Because they do not have children with outsiders, they have developed an unusual gene pool. Greater Risk For Some Diseases The 60,000 Amish and Mennonites, or "Plain People," in Pennsylvania are all descended from fewer than 100 Europeans who came to America in the 1700s. In a way, the Plain People are all related to each other. They all have similar genes. Genes, which are made of DNA, are the blueprint for how a person develops. All the people in a family, for example, may need to wear glasses. In this case, a gene for bad vision is being passed down to each generation of that family. For the Plain People, their genes make them more likely to get some diseases and less likely to get others. That's why Amish and Mennonite children are at greater risk for certain genetic diseases than the general population. The Clinic for Special Children in Strasburg has been working to treat these rare conditions for the past 25 years. The medical center opened its doors in Co-founder D. Holmes Morton was working at another hospital in 1988 when he encountered a 6-year-old Amish boy named Danny Lapp with an undiagnosed disease that left him brain damaged and unable to use his limbs. Small Clinic, Big Results Doctors thought the boy had a disease called cerebral palsy. Morton, however, identified the boy's disease as glutaric aciduria type 1 (GA1), a rare condition that attacks the brain. At the time, there were only eight known cases of GA1.

3 The Lapp case changed Morton s life. He co-founded the Clinic for Special Children of Strasburg with his wife, Caroline Morton, and began serving and studying the Plain People. GA1 is one of more than 150 diseases and genetic conditions the clinic has identified that affect the Amish and Mennonites of Lancaster County. For instance, Amish babies are 100 times more likely to have GA1 than other babies. At the same time, Morton said, diseases that affect the general population, such as cystic fibrosis and sickle cell disease, do not exist among the Plain People. In addition to seeing patients every day, clinic researchers publish three to five papers a year and participate in 25 research projects with hospitals worldwide. Between their research and work treating patients, doctors at the clinic have transformed health care for Amish and Mennonite children. They have managed to find treatments for diseases that used to be death sentences for children like Benjamin. They have also advanced our knowledge of genetic conditions, possibly leading to cures for diseases that affect everyone. Jan Bergen, of Lancaster General Hospital, said she was awestruck by the small clinic s big results. They are unique in the world, Bergen said.

4 Quiz 1 Select the option that BEST provides an accurate summary of the article. Doctors at the Clinic for Special Children in Strasburg specialize in treating the Amish and Mennonite children with rare genetic disorders. Dr. Morton co-founded a clinic with his wife to study the unusual gene pool of Amish and Mennonite communities. Amish and Mennonite children are at a greater risk for rare genetic disorders than the general population. Children like Benjamin are difficult to treat as they belong to the Amish and Mennonites. 2 Which of these details from the article MOST STRONGLY supports the title of the article? GA1 is one of more than 150 diseases and genetic conditions the clinic has identified that affect the Amish and Mennonites of Lancaster County. In addition to seeing patients every day, clinic researchers publish three to five papers a year and participate in 25 research projects with hospitals worldwide. They have managed to find treatments for diseases that used to be death sentences for children like Benjamin. Jan Bergen, of Lancaster General Hospital, said she was awestruck by the small clinic s big results. 3 Which of the following does the author use to show the difficulty in diagnosing and treating rare genetic disorders? confusion among most doctors to identify the cause for genetic disorders the lifestyle of the Amish and Mennonites work done by Dr. Morton and his team description of the GA1 disease 4 What purpose does the section "Small Clinic, Big Results" serve in the article? It highlights the contribution of the clinic in the study and treatment of genetic disorders. It describes the probability of Amish kids suffering from genetic disorders. It shows the importance of the clinic in Morton's life. It explains the severity of the GA1 disease.

5 Answer Key 1 Select the option that BEST provides an accurate summary of the article. Doctors at the Clinic for Special Children in Strasburg specialize in treating the Amish and Mennonite children with rare genetic disorders. Dr. Morton co-founded a clinic with his wife to study the unusual gene pool of Amish and Mennonite communities. Amish and Mennonite children are at a greater risk for rare genetic disorders than the general population. Children like Benjamin are difficult to treat as they belong to the Amish and Mennonites. 2 Which of these details from the article MOST STRONGLY supports the title of the article? GA1 is one of more than 150 diseases and genetic conditions the clinic has identified that affect the Amish and Mennonites of Lancaster County. In addition to seeing patients every day, clinic researchers publish three to five papers a year and participate in 25 research projects with hospitals worldwide. They have managed to find treatments for diseases that used to be death sentences for children like Benjamin. Jan Bergen, of Lancaster General Hospital, said she was awestruck by the small clinic s big results. 3 Which of the following does the author use to show the difficulty in diagnosing and treating rare genetic disorders? confusion among most doctors to identify the cause for genetic disorders the lifestyle of the Amish and Mennonites work done by Dr. Morton and his team description of the GA1 disease 4 What purpose does the section "Small Clinic, Big Results" serve in the article? It highlights the contribution of the clinic in the study and treatment of genetic disorders. It describes the probability of Amish kids suffering from genetic disorders. It shows the importance of the clinic in Morton's life. It explains the severity of the GA1 disease.