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

At a clinic in a barn, doctors find cures
for rare genetic diseases
By Philadelphia Inquirer, adapted by Newsela staff
11.02.14
Grade Level 7Word 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.
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 1990. 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.
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.