Goshen News, Goshen, IN

Life

November 3, 2013

WHOLE FAMILY: Clinic will make strong community stronger

The ceremonial ribbon was cut a week ago, but the Community Health Clinic (CHC) in Topeka has been doing new things since September already. And if the inspiring words and steady support shown at an annual fund-raiser Oct. 26 are indicative, bigger and better endeavors are in the clinic’s future.

That’s good news for many of you. That’s good news for the community.

Renowned physician Dr. Holmes Morton of the Clinic for Special Children in Strasburg, Pa., shared his personal experience with about 300 of us at the Dutch dinner in Shipshewana Oct. 26 to officially reinforce our local clinic’s mission, which is “to provide excellent and affordable medical care consistent with the needs of the Amish, Mennonite and other rural northern Indiana communities, with a focus on individuals and families with special health care needs.”

Over a cup of coffee served to me by an Amish couple after a delicious meal, I listened closely as Dr. Morton shared parts of an essay he had written about the life lessons he’s learned working with Plain families in Pennsylvania in his non-assuming clinic after which our local clinic in Topeka is modeled.

“The children didn’t always have a voice,” said the doctor, “but the idea of the special child was always in the community.”

Their voice, he said, comes from us giving them one.

Dr. Morton is a Harvard-trained physician. He’s worked at big, fancy, important hospitals. But, moved more by the mysteries of genetic disorders found among Amish children and the conviction that answers were discoverable, he chose to work in Lancaster County, Pa., starting a clinic that would screen for, treat and offer research about those genetic disorders.

The gentle pediatrician, voice cracking at times, told us he considered stopping his work in Pennsylvania in the late 1980s and nearly mortgaged his home when, at the proverbial 11th hour, the community there caught on what amazing work he was doing and stepped up with donations that continue to keep the clinic running.

Dr. Morton’s work in diagnosing, sometimes treating and offering unique research about rare genetic disorders among the Amish and Plain communities is changing, often saving, lives. He came to Shipshewana a week ago to tell us we can and will do the same here.

The CHC in Topeka hired over the summer Dr. Zineb Ammous, a physician with a passion for treating people with genetic diseases. She has a “compassionate heart for the children with special needs and their families,” says the CHC newsletter.

Dr. Ammous told dinner guests last Saturday that Indiana Plain families can count on “meaningful new ideas, creative new approaches and important new discoveries” from the Topeka-based clinic.

So, what, exactly, does the CHC do?

It offers a portal for Amish and Plain families to get resources and participate in research related to health needs often unique to the community. The clinic hopes to more accurately and thoroughly screen newborns, for example, catching diagnoses early so parents can address genetic disorders right away.

Have you heard of disorders like nonketotic hyperglycinemia, phenylketonuria, pyruvic kinase deficiency, troponin myopathy, aka “chicken-breast disease?” How about maple syrup urine disease? Severe combined immunodeficiency (SCID)?

Big words, I know, and only mildly familiar to me thanks to several years with my nose in nursing books. Turns out they and others are all found among the Amish and Plain communities, who can trace their roots to a small 200 or so 18th-century founding families. The clinic hopes to help accurately diagnose these kinds of disorders and help families find resources.

Dr. Morton shared stories of children living long, full lives — children who likely would have died or suffered without a proper diagnosis.

The CHC has for several years already been working with Amish “bleeder” families, partnered with the Indiana Hemophilia and Thrombosis Center, and will continue to do so. A medical board of directors also offers counseling to Amish and Plain families about where and how to get testing and treatment locally, even negotiating reduced rates for the community. The clinic will continue to offer those services as well.

Of course I was absolutely charmed by Dr. Morton, a lovely human, and his passion for helping families. I especially appreciated his common-sense, compassionate approach to medicine. To wit: He can diagnose a rare genetic disorder with a relatively non-invasive, $50 test and spare families thousands of dollars and painful procedures. He also pointed out that some disorders are not, in fact, rare among the Amish. It’s just they’ve been rarely diagnosed.

As I listened to Dr. Morton encourage the local clinicians, patrons and donors, I thought of the scores of babies whose blood I’ve taken for metabolic testing. I thought of my Amish friend, whose sweet baby died of a genetic kidney disease. I thought of families who say, “Something’s just not right with my baby” who now might get answers.

I thought of all the greatness that can come when people work together to meet these special needs — working together under the motto Medical Board of Directors Dennis Lehman quoted to end the evening affair: “It’s amazing what we can achieve when we don’t worry about who gets the credit.”

What a lovely community.

Goshen News columnist Stephanie Price is a wife, mother, teacher, childbirth educator, midwife’s assistant and nursing student from Elkhart. Contact her at wholefamily@goshennews.com, 269-641-7249 or on Facebook at the page “Whole Family Column by Steph Price.”

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