One of our goals is to advocate for Newborn Screening throughout the United States and laws that support medically ill children. In 2017, we plan on doing this more by sharing links to petitions, asking you to contact your local state representatives. All states do a simple heel prick test soon after birth to test all babies for diseases that are treatable, but not every state tests for all the disorders. Some states test for a lot more and some test for less diseases. However, all children deserve a chance at life.
One of the diseases we advocate for Newborn Screening for is Krabbe Disease, a neurological genetic disease that affects that white matter of the brain that is usually fatal by age two. Without treatment, Krabbe Disease is fatal. Early Infantile Krabbe Disease especially progresses very fast and by the time they are diagnosed at around 6 months old, it is usually too late for treatment. With Newborn Screening, children can get diagnosed with Krabbe Disease at birth and therefore can receive a cord blood transplant. A transplant is NOT a cure, but it has about a 90% success rate. Whereas without treatment, they will most likely continue to deteriorate. Laws need to be passed in every state in order for it to be mandated for screening. Only 4 states currently test for Krabbe at birth: New York since 2006, Missouri since 2012, Kentucky since 2016 and Ohio since 2016. Several states have passed laws to include Krabbe Disease in their Newborn Screening Program along with other similar diseases, but they haven’t implemented it yet: Illinois, Louisiana, New Jersey, New Mexico, Pennsylvania, and Tennessee. Learn more by clicking here.
Laws that support medically ill children include those that help children get the treatment and care they need. We will be sharing petitions as soon as there are available to get laws to pass as well as how to contact your state’s local representatives.
Advocating is important because these children can’t speak for themselves and they need us to make sure all children have a chance at a healthy life as well as get access to the treatment they desperately need.