Midwifery Pearls: Caring for the Newborn Clinic for Special Children's 2018 Midwife Conference Thursday, May 24th |...
Last week, Clinic for Special Children's Dr. Kevin Strauss (Medical Director) and Teresa Rineer (Development Director) traveled...
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Special children are not just interesting medical problems.Nor should they be called burdens to their families and communities. They are children who need our help. If we allow them to, they will teach us compassion. If we allow them to, they will teach us love. They will make us better scientists, better physicians, and more thoughtful people.
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.
Enabling Julia to Live a Better Life
Julia was diagnosed with glutaric acidemia type I (GA-1) at 5 days of age. GA-1 is a genetic disorder in which the body is unable to process proteins properly. Without proper management, the disorder can cause physical and intellectual disability.
After learning of the diagnosis, Julia’s mother was devastated to learn that many children with GA-1 suffer from debilitating effects of the disorder. Unable to find anyone with experience in the disorder locally, Julia’s mother began an international search to find a service that could help her daughter. Julia’s mother learned of the Clinic for Special Children by searching online. The only problem was Julia’s family lived in Hawaii and CSC was located in rural Pennsylvania.
Wanting to ensure the best possible care for Julia, her family moved to Strasburg for what ended up being four years. Fortunately, the Clinic was able to help Julia. “I can’t put in words what Dr. Strauss means to us… he helped us in ways you cannot even imagine,” says Julia’s mother. After Julia grew to an age where a devastating brain injury was much less likely, she and her family were able to move back to Hawaii.
Today, Julia is an active, beautiful and vibrant 5 year old who enjoys dancing, swimming, and wants to learn to surf. Julia’s family, originally from Brazil, set up a Facebook page in Portuguese to help connect other families with the services offered by CSC. As a result, patients from Brazil, Portugal, and Spain have been helped by CSC’s services.
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.