CAMPBELL, MO (KFVS) - The Brady Bill is supposed to take effect next month in Missouri, making five new newborn screenings mandatory.
The bill, however, has hit a pretty big snag. The state of Missouri is not only not ready to test babies for the disease that killed a Campbell child before his first birthday, but it won't make deadline on any of the new screenings.
"I feel it's a constant battle," said Dustin Cunningham.
Dustin and Jessy Cunningham can't seem to get a break.
"We're just here to tell the devil we're not stopping on this," said Jessy Cunningham.
The Campbell couple lost their infant son Brady in 2009 to Krabbe Disease. It is a rare genetic disease that devastates the nervous system.
Doctors told the Cunningham's if they only knew at Brady's birth about his disease they likely could have saved him.
"I heard him cry and I heard him scream," said family friend Karen George. "If anyone could see what I saw with the suffering of that little boy they wouldn't be stalling on this."
The Cunningham's fought immediately to get legislation introduced in Missouri to get Krabbe Disease and four other diseases added to required newborn screenings.
Governor Jay Nixon signed the Brady Bill into law in July of 2009.
Just last month there was fear that the screenings wouldn't be funded.
Then relief came as everything, including confusion with appropriations, got back on track.
"We felt like things were finally over and nothing could get in our way," said Jessy Cunningham.
Then out of no where the Cunningham's got a call saying the state lab won't be testing for Krabbe Disease.
"It's frustrating, you get tired of negativity every time you think it's going forward," said Dustin Cunningham.
A contract between the state and the company chosen to develop the screenings shows Advanced Liquid Logic planned to test for three of the diseases, and added on two other diseases. However, Krabbe and another illness Niemann-Pick were not included.
"I think if they would have gone with a different company, it would have been well worth it and everything could have been done on time," said Jessy Cunningham.
On the contract it says the screenings shall be provided "when developed by the contractor".
According to the Department of Health and Senior Services part of the reason is financially driven, and as it turns out the state won't be ready to screen for any of the diseases on the Brady Bill by July 1, 2012 as mandated.
However, the state has already paid the company developing the tests $90,000. That is not to mention man hours paid.
Part of that money came from new parents who pay money for newborn screenings every time a baby is born.
The Cunningham's just want answers.
"This is a violation, and what they've done should not be allowed," said Jessy Cunningham.
No word on when the screenings will begin. According to Professor Michael Gelb from the University of Washington, his lab developed the test for Krabbe Disease.
He says New York is using his lab's tests, and Illinois will soon.
Gelb says Missouri is trying out different, possibly cheaper technology which he says may or may not work.