At a clinic in a cornfield, doctorscure children with rare diseases
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, Benjamin developed a mysterious
illness. He would vomit and pass out. He wouldn’t eat, and he lost weight.
Over five agonizing months, his parents took him to 12 doctors at six hospitals in
the Philadelphia area. They made sure the child got the best treatment that
modern medicine could offer. Nevertheless, nothing seemed to help.
“He was fading out, we were going to lose him,” said his father, Amos Glick.
It took a clinic in a Pennsylvania cornfield to save the boy.
The clinic was called the Clinic for Special Children in Strasburg. It had an
unusual specialty: treating Amish and Mennonite children with rare genetic
disorders.
By Philadelphia Inquirer, adapted by Newsela staff on 11.02.14
Word Count 852
Most Doctors Were Baffled
The Amish are a Christian community with strict religious and cultural practices
who immigrated from Europe in the 1700s. Along with the Mennonites, Amish
Americans have preserved their way of life over the centuries. They choose to
go without electricity and other modern technologies and limit the influence of
the outside world.
Most of the doctors who Benjamin Glick had seen were baffled by his case, but
doctors at the Clinic for Special Children in Strasburg had seen similar
symptoms in other children in the Amish and Mennonite communities. They
discovered Benjamin had a rare milk-protein allergy. They changed Benjamin's
diet and his condition stabilized in a month.
A big hospital likely would have treated Benjamin individually, failing to make
connections to the medical history of his community, said Kevin Strauss, a
pediatrician and 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.
Distinct Gene Pool
Throughout their history, Amish and Mennonites have stayed relatively isolated:
they speak their own language, keep up longstanding traditions, and only marry
within the church. Because they do not have children with outsiders, they have
developed a distinct gene pool.
For example, Lancaster County has 60,000 Amish and Mennonite citizens, or
"Plain People." They descended from fewer than 100 settlers who immigrated to
Lancaster in the early 1700s.
Through the generations, no new genes were added into the population from
outsiders. Whatever was unusual about the original gene pool was multiplied
and magnified over the years, rather than being diluted by mixing with other
gene pools.
Because they have such distinct genes, Amish and Mennonites 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.
Parking Lot For Horses
The clinic is run out of a barnlike building that was built in a single day by Amish
and Mennonite craftsmen. It has parking spots for horses and buggies out front
and dairy cows graze out back. Inside, 63-year-old pediatrician D. Holmes
Morton and his team practice cutting-edge medicine.
Morton was working at the Children’s 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.
Doctors thought the boy had a disease called cerebral palsy. Morton, however,
identified his 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 studying the
gene pool of 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
infants. At the same time, Morton said, diseases that strike the general
population, such as cystic fibrosis and sickle cell disease, do not exist among
the Plain People.
"Unique In The World"
Before 1990, 90 percent of children suffering from GA1 had irreversible brain
damage that left most of them severely disabled. Now, if caught early, those with
the disease suffer no brain injury and have been able to live normal lives thanks
to treatments at the clinic.
Jan Bergen, chief operating officer at Lancaster General Hospital, said she was
“awestruck” by the small clinic’s big results.
“They are unique in the world,” said Bergen, who works with the clinic on
research projects.
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 its 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.
Quiz
1 Select the option that BEST provides an accurate summary of the article.
(A) Dr. Morton and his team run a clinic to treat Amish and Mennonite
children with rare genetic disorders.
(B) Owing to their distinct gene pool, the Amish and Mennonites face a
greater risk of suffering from rate genetic disorders.
(C) Owing to a distinct and isolated style of living and marrying within
the church, the Amish and Mennonites have developed a distinct
gene pool.
(D) Glick's early diagnosis of the GA1 disease helped save the lives of
other such patients suffering from diseases that cause irreversible
brain damage.
2 Which of the following sentences from the article BEST supports the main idea?
(A) A big hospital likely would have treated Benjamin individually,
failing to make connections to the medical history of his community,
said Kevin Strauss, a pediatrician and the clinic's medical director.
(B) Whatever was unusual about the original gene pool was multiplied
and magnified over the years, rather than being diluted by mixing
with other gene pools.
(C) GA1 is one of more than 150 diseases and genetic conditions the
clinic has identified that affect the Amish and Mennonites of
Lancaster County.
(D) Before 1990, 90 percent of children suffering from GA1 had
irreversible brain damage that left most of them severely disabled.
3 Why does the author of the article include the following sentence in the text?
"They are unique in the world," said Bergen, who works with
the clinic on research projects.
(A) to describe the distinct gene pool of the Amish and Mennonites
(B) to show the uniqueness of the symptoms of GA1 that attacks the
brain
(C) to highlight the exclusivity of genetic disorders that affect the Amish
and Mennonites
(D) to show Dr. Morton's and his team's pioneering work in treating rare
genetic disorders
4 Why does the author begin the article with Benjamin Glick's case?
(A) to show how his case led the way for the treatment of rare genetic
disorders
(B) to highlight the unwillingness of modern medicine to treat rare
genetic disorders
(C) to describe the difficulty faced in the diagnosis and treatment of
rare genetic disorders
(D) to show the high probability of rare genetic disorders being
prevalent in the Amish and Mennonites
Answer Key
1 Select the option that BEST provides an accurate summary of the article.
(A) Dr. Morton and his team run a clinic to treat Amish and
Mennonite children with rare genetic disorders.
(B) Owing to their distinct gene pool, the Amish and Mennonites face a
greater risk of suffering from rate genetic disorders.
(C) Owing to a distinct and isolated style of living and marrying within
the church, the Amish and Mennonites have developed a distinct
gene pool.
(D) Glick's early diagnosis of the GA1 disease helped save the lives of
other such patients suffering from diseases that cause irreversible
brain damage.
2 Which of the following sentences from the article BEST supports the main idea?
(A) A big hospital likely would have treated Benjamin individually,
failing to make connections to the medical history of his
community, said Kevin Strauss, a pediatrician and the clinic's
medical director.
(B) Whatever was unusual about the original gene pool was multiplied
and magnified over the years, rather than being diluted by mixing
with other gene pools.
(C) GA1 is one of more than 150 diseases and genetic conditions the
clinic has identified that affect the Amish and Mennonites of
Lancaster County.
(D) Before 1990, 90 percent of children suffering from GA1 had
irreversible brain damage that left most of them severely disabled.
3 Why does the author of the article include the following sentence in the text?
"They are unique in the world," said Bergen, who works with
the clinic on research projects.
(A) to describe the distinct gene pool of the Amish and Mennonites
(B) to show the uniqueness of the symptoms of GA1 that attacks the
brain
(C) to highlight the exclusivity of genetic disorders that affect the Amish
and Mennonites
(D) to show Dr. Morton's and his team's pioneering work in treating
rare genetic disorders
4 Why does the author begin the article with Benjamin Glick's case?
(A) to show how his case led the way for the treatment of rare genetic
disorders
(B) to highlight the unwillingness of modern medicine to treat rare
genetic disorders
(C) to describe the difficulty faced in the diagnosis and treatment
of rare genetic disorders
(D) to show the high probability of rare genetic disorders being
prevalent in the Amish and Mennonites