Help Kayleen Wilson Find A Cure For PKU

by Miriah Turner on May 19, 2014 at 11:44 am

 A nine year old girl from Newark is raising awareness for a disorder that she’s been battling since she was 14 days old.

Kayleen Wison suffers from Phenylketonuria, or PKU, a rare disorder that effects one out of every 25,000 babies in the United States. She is missing an enzyme which breaks down an amino acid, the building blocks of proteins. Without the enzyme, levels of the amino acid can build up causing damage to the central nervous system and in some cases cause brain damage.

"She’s a Phenylketonuric. She can’t eat phenylalanine, which is an amino acid located in protein and foods. The disorder is found in the chromosome pair passed on by her mother, Amy, and myself. Each of our three girls had a 25% chance of getting the disorder. Kayleen is the only one who has it," said Chad Wilson, Kayleen’s Dad.

Kayleen can only have around 4 grams of protein a day which is monitored through a blood prick. The specially manufactured low protein foods which the Wilson family must order online are very expensive.

"I can only have fruits and vegetables. There’s this company called Cambrooke where I get a bunch of my food, like my bread and stuff. My favorite thing is hot dogs that they make, with no protein in them. They’re really good," said Kayleen.

According to Kayleen’s father, Chad, the size of a large coffee can full of the powdered substance to mix with water to make special non-protein eggs is about $60 and a loaf of Kayleen’s bread is $12..

The Wilson family works through Nationwide Children’s Hospital with Kayleen’s condition. If you would like to donate to Kayleen’s cause and help her find a cure for PKU, you can visit her website at

One of Kayleen’s goals once a cure is found for PKU is to finally try bacon.

More Information about Pku:

Kayleen’s Special Foods: