Joe

When Joe was 3 weeks old, coverage of his PKU medical formula was denied by our employer provided insurance. We couldn’t believe it. He was being denied insurance coverage for the only treatment that would prevent intellectual disability and allow him to grow up healthy. Our country has forgotten the heartbreaking stories of institutionalized PKU children born before newborn screening. We have forgotten their suffering. It’s not enough to tell a parent their child can be saved from disability, we must make sure they have access to the treatment that will save them.