Krabbe Disease Screening For Newborns

Krabbe disease is a little-known condition that can affect people of any age but most commonly presents itself in infancy. It affects about 1 in 100,000 people in the United States alone and while it can be treated, there is no cure.

However, the earlier it is discovered the better the chances for successful treatment are and better the quality of life for the patient. In infants, the disease is generally fatal before age two. Patients with late-onset Krabbe disease tend to have a slower progression of the disease and live significantly longer.

Currently only three states have added a test for Krabbe disease to their newborn screenings - Illinois, Kentucky, and Pennsylvania. The purpose of my petition is to encourage our government to make it a law that ALL hospitals test for Krabbe disease in newborns. The earlier the diagnosis, the better chance for longer survival.

I lost my son, Gerald Ellis, to Krabbe Disease when he was only 16 months old. While I know there is no cure, had he been diagnosed sooner, he may have had a better chance at a longer survival. Please sign and help other babies who may have Krabbe Disease have a chance at a better life!