Zay and Ellies PKU Fundraiser
Start: Jan 1, 2017 - End: Dec 31, 2019
Our kiddos, Zay & Ellie Austerman were born with a rare genetic disorder called Phenylketonuria (PKU). We like to say that our kiddos have PKU, but PKU doesn’t have them! 🙂
In a very quick summary, PKU is a rare genetic disorder in which the body does not have the enzyme to break down the amino acid called phenylalanine (Phe). As a result Phe will begin to build up in the body and cause a number of negative effects, including mental retardation. This amino acid is found in protein.
Basically, individuals with PKU cannot eat protein. Individuals with PKU don’t eat: milk, cheese, ice cream, or any other dairy product. No eggs, meat, poultry, fish, nuts, beans, wheat. What can they eat? Basically what they can eat from the supermarket is fruits and vegetables. And even some of those are limited. Everything else is specially ordered from a few select companies across the United States and delivered by mail.
This sounds a little complicated, right? Well to further complicate PKU, it is necessary to know that everyone needs a certain amount of Phe for growth and tissue repair. Most of the time when people eat Phe, the excess Phe is converted to another amino acid and used in your body in different ways. But because a person with PKU cannot break down this Phe, it will begin to build up in their body. PKU patients who consume too much Phe are at risk of severe neurological complications, including IQ loss, memory loss, concentration problems, mood disorders, and in some cases, severe mental retardation.
Damage done is irreversible so early detection is crucial. We learned of PKU through the newborn screening!!! When treatment is begun early (within the first few weeks of life) and rigorously adhered to, affected children can expect normal development and a normal life span. Yay!
However, this diet is a challenge, not to mention expensive! We are so blessed that we have the education and knowledge that we do to raise our kiddos on the diet they need and with the foods that they can eat! However, we are always praying for a cure! So one day, our kids can attend a birthday party and not be left out from the cake and ice cream. Or they can go out to eat at a restaurant!! Or they can simply partake in picnics and barbecues and school parties and every other place where food shows up! We dream of a day when we can leave the house without packing a cooler with food and formula!
So….we are raising money for research and hope of a cure for PKU!!! Research is being done…and we truly believe that a cure is possible within our kid’s lifetime!!!!! Thanks for helping and hoping that one day our kids will live a life where they don’t have to be defined by what they can or can’t eat!
**All funds will be donated to the National PKU Alliance to support research for a cure! http://www.npkua.org/ (Tax ID# 26-2849140)
Making a Difference In: Mount Vernon, IA
Fund Leader: Jackee Austerman
Fund Type: Medical Causes