You and PKU




Read a story together that explains the fundamentals of PKU in a very simple and enjoyable way.



After completing this activity, children will be able to:

  • state they were born with PKU
  • explain that when phe gets into the blood of a person with PKU it doesn't get carried throughout the body and used like it should. It stays in the blood, resulting in high blood levels



Read the book You and PKU, by Virginia Schuett and Margaret Taylor. Have the children take turns reading through the book.

To help the children understand the PKU diet better, lead a discussion as you read through the book. Some ideas to start:

  • After reading page 5, compare the PKU diet to other kinds of diets. Help the children to understand how certain things may not be good for different peoples' bodies. Ask if any of them know of anyone on a special diet (such as weight reduction, low salt, low fat, etc.)
  • After reading page 15, you can relate this to how a car needs the right kind of gas to run, just like we need the right kinds of food to run well. For people with PKU that includes foods that are low in protein and phenylalanine.
  • After page 17, ask the children to name all the different colors and what foods have those colors.


  • Book: You and PKU by Virginia Schuett and Margaret Taylor. Available from the National PKU News website under "Diet-Related Information."



At home you can re-read the book and discuss your child's feelings about different things such as: blood draws, clinic visits, drinking formula, and eating low protein/low phenylalanine foods.


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