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