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Article by Anne Harnish, Food and Family Features Editor at Lancaster Farming NEWMANSTOWN, Pa. — Fourth-grader Shane...
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There is a way to use the power of genetic knowledgeand biochemical knowledge to predict and prevent disabilities in children. And I've devoted my life to that idea.
A Medical Home That Makes a Real Difference
Our clinic serves as a trusted medical home for Amish and Mennonite families working to prevent and treat genetic illness in their young children. The sturdy, timber-framed building was “raised” by the hands of those in the Anabaptist community it serves just outside of Strasburg, PA. Inside, it is filled with an array of high-tech gene sequencing tools that allow us to deliver highly personalized care—a precise treatment option for the right patient at the right time.
The Newkirk Family
Kris and Maureen Newkirk experienced an easy pregnancy and delivery with their third son, Charlie, in December of 2015. They never expected that several days after Charlie was born his state newborn screen test would come back positive for a disorder they had never heard of – Glutaric Acidemia Type 1 (GA-1). The Newkirk family soon learned that only four other people had been diagnosed with GA-1 in their home state of Arizona. GA-1 is a genetic disorder in which the body is unable to break down essential amino acids, which can lead to irreversible brain damage.
At four-days-old, Charlie started treatment at Phoenix Children’s Hospital with a strict diet of a special formula just for GA-1 patients in order to prevent brain damage. Over the next year and a half, Kris and Maureen conducted a great amount of research on GA-1 and quickly realized limited information was available. During their research efforts they kept finding the name of Dr. Kevin A. Strauss and the Clinic for Special Children.
The Newkirk family decided to take a leap of faith and travel to Pennsylvania to meet with Dr. Strauss to learn more about GA-1. Their first appointment at the Clinic included a three hour meeting with Dr. Strauss where he explained the Clinic’s research and many years of experience with GA-1. Maureen and Kris said of that first meeting, “We walked away with the feeling that Charlie was going to be okay. There’s something magical about coming down the lane to the Clinic with its reassuring feeling – it’s so different than anything out there.”
The Newkirk family says that each year gets easier as Charlie is allowed more protein and stress the importance of the newborn screen test. Unlike when Charlie was younger, they are able to treat him at home when he is sick, and don’t have to visit the hospital. Today, Charlie is a happy three-year-old and enjoys playing with his older brothers, who are always looking out for their little brother.
In addition to being a patient family, Kris and Maureen Newkirk have been amazing supporters of CSC along with the Crain Family Foundation (check out our Donor Spotlight section in this issue to read more about their efforts!) and are advocates for giving back to the rare disease community. We look forward to seeing the Newkirk family each summer when they visit the Clinic!
Help us to continue to provide patients with timely, affordable and effective care!
Our clinic serves as a trusted medical home for families working to prevent and treat genetic illness in their children. Serving predominantly Amish and Mennonite families, the sturdy, timber-framed building was "raised" by the hands of those in the Anabaptist community outside of Strasburg, PA. Inside the clinic is filled with an array of high-tech gene sequencing that allows us to deliver state of the art care in a nurturing environment.