The Bridges Family

Ainsley - PKU

What Rare Disease were you or your family diagnosed with?

Phenylketonuria (PKU).

Please tell us how long ago and how your journey with your rare disease started?

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. . 

What is your greatest hope for your child?

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.