Ellie and Zay

Looking at this brother and sister pair, you don’t see anything besides two happy kids. Thankfully, Zay and Ellie are happy ­ and healthy!! You would never guess that there is anything different about them, that is, until you sit down to have a meal with them. Then you realize just how different they are. They can’t eat meat, or eggs, or dairy products, or nuts, or typical grains. Thanks to the newborn screening test, both Zay and Ellie were saved from the irreversible brain damage that their genetic condition, PKU could have done.

Zay and Ellie live in Mt Vernon, IA with their parents. Each day their family weighs, measures, and calculates the amount of protein, and more specifically phenylalanine (phe) that each child eats. Their diet consists of low protein specialty foods, as well as their PKU formula, Periflex. Their bodies are not able to break down the Phe in food, and it causes damage to their brain if it is not monitored extremely closely.

With the help of medical nutrition Zay and Ellie get to live a normal life. They are able to bring their specialty foods along with them to every occasion so that they can participate in life just like their peers. Their family is so thankful for healthy children, however there is another aspect to their story, medical foods and formula is incredibly expensive! Without insurance coverage, the hardships for these kids and their family would be overwhelming.

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The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.