My name is Sarah. Im 24 and I have classical PKU which means my enzyme in my liver has a hard time fuctioning breaking down phenylalanine. I’ve always had struggled with keeping my phe levels in range. Which when they are high create severe brain damage over time. Low protein foods and forumla are essential to living with PKU. My medical insurance does not cover any costs. As an adult its so much harder because the cost of treatment is way more then what I can afford. Being constantly rejected for financial responsibility as heath insurance is very fustrating. I’m also 25 weeks pregnant. Its crucial for me to have acess to my forumla and low protien food. With out I can not maintain my phe levels between 2 and 4 to ensure my baby will not come out with birth defects or have a misscarriage. Even life after the baby is born will be tough trying to cover the baby’s needs and my needs.
- Ellis, Age 12