NEW CUMBERLAND, Pa. (WHTM) – A Cumberland County family is bringing awareness to a rare genetic disorder called PKU. One in ten thousand children has it.
Zoe Hoover is a bubbly, bright, big smiled child whose parents world was turned upside down when they learned she has PKU. Justin and Ashley Hoover have three children. Only the four-year-old, Zoey, is dealing with a three letter genetic disorder. Zoey said, “I’m just not allowed to have food like you guys are allowed to have.”
PKU stands for Phenylketonuria. Justin Hoover explained “When you eat protein, it’s like a train with 26 trailer cars. Her body doesn’t break down one of them it just builds up and builds up.” If not treated by the age of three the child will begin to have developmental delays. Luckily, Hershey Med caught Zoey’s PKU at birth with the heel test.
Some things parents should look out for are agitation, confusion, and slow learning in your child. If you notice any of these symptoms, talk to your pediatrician. In Pennsylvania, the medicine to manage PKU is financially covered. Hoover said, “It kick starts her liver to break down the protein.”
But not the food is not covered. Nuggets made from powder cost $26.00 a bag. A bag of noodles — $12.00. In total PKU food for this little one costing more than $250.00 a month. Hoover said, “It’s all out of our pocket.” Zoey’s teacher Sharon Zimmerman said, “These middle-class parents that have 3 children are struggling.”
The Hoovers say one of the biggest issues is awareness. National PKU awareness day is December 3rd. However, her teachers wear PKU shirts every week all year long in hopes of raising more funding, more research and more answers. Zimmerman said, “It’s something she’s going to have for the rest of her life…there’s no cure.”
The Hoovers say to make sure your child doesn’t have PKU, get the heal test done first thing when they’re born.
To financially help the Hoover Family support Zoey’s PKU disorder you can go to this link: https://www.gofundme.com/tu4yrtx4