Our daughter, Ainsley, has phenylketonuria (PKU), which is a rare, inherited metabolic disorder that is characterized by the inability of the body to utilize an amino acid found in protein. The treatment includes an extremely limited low-protein diet, which requires weighing and recording all food eaten on a daily basis. It also includes extremely expensive dietary supplements that often insurance does not cover but is essential to our daughter’s health and well-being. .
Our hope is that policy-makers work to make it easier for families to pay for the treatment that is critical for the health and cognitive development of individuals with PKU.