01/24/2012 1 Comment Contact Our News Editors

Phenylketonuria (or PKU) is a condition in which a baby is born without the ability to break down amino acid. Its hereditary and both parents must have the gene to pass it to their child. If not diagnosed early enough and not treated properly, the condition can lead to brain damage and death.

PKU is one of 29 screening tests doctors are mandated to perform at birth across the nation. However, that mandate is not strictly enforced and budget issues have hindered the screening process nationwide.
Kevin Alexander has been living with PKU for most of his life but says he is used to it. He cannot have steak, eggs - any amount of protein larger than that of a slice of grilled chicken.
"When Phenylketonuria builds up in the liver - it doesn’t have a place to go, it builds up in the brain and once it's there if it's not treated well, it can cause brain damage," says Alexander.
As part of his regiment, he takes four to six medicinal protein shakes – shakes that can cost him thousands of dollars a month.
Kevin Alexander is one of about 15,000 Americans living with PKU. The costs for treatments run in the thousands and thankfully, according to Kevin, the State of Louisiana aids in covering the costs for the special proteins and foods. However, that state coverage could have been in recent budget cuts. It wasn’t, but that was the catalyst for his production a documentary on PKU and raising awareness of the rare disorder.

You can watch the documentary here:

Alexander lives a normal life and plans on doing just that. However, there are many who simply can’t. That is one of many reasons he is taking up the charge of raising awareness of PKU.