Brady Bill won't take effect on July 1 as mandated - KFVS12 News & Weather Cape Girardeau, Carbondale, Poplar Bluff

Brady Bill won't take effect on July 1 as mandated

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.

Copyright 2012 KFVS. All rights reserved.

  • Heartland NewsMore>>

  • Drowned man in Lake Wappapello, identified

    Drowned man in Lake Wappapello, identified

    Monday, July 23 2018 6:01 AM EDT2018-07-23 10:01:18 GMT
    MSHP is assisting in searching for a person who did not resurface. (Source: KFVS)MSHP is assisting in searching for a person who did not resurface. (Source: KFVS)

    A search is underway for a missing swimmer at Lake Wappapello.

    A search is underway for a missing swimmer at Lake Wappapello.

  • What you need to know July 23

    What you need to know July 23

    Monday, July 23 2018 5:20 AM EDT2018-07-23 09:20:38 GMT
    We're in for a beautiful work week (Source: Crab Orchard National Wildlife Refuge)We're in for a beautiful work week (Source: Crab Orchard National Wildlife Refuge)
    We're in for a beautiful work week (Source: Crab Orchard National Wildlife Refuge)We're in for a beautiful work week (Source: Crab Orchard National Wildlife Refuge)

    Good morning, it is Monday, July 23. First Alert Forecast We’re going to have a pretty start to our work week. 

    Good morning, it is Monday, July 23. First Alert Forecast We’re going to have a pretty start to our work week. 

  • What you need to know July 20

    What you need to know July 20

    Monday, July 23 2018 5:19 AM EDT2018-07-23 09:19:41 GMT
    First Alert Action Day due to severe storm threat. (Source: KFVS)First Alert Action Day due to severe storm threat. (Source: KFVS)

    Today is a First Alert Action Day. Parts of the Heartland were upgraded to a moderate risk of severe weather. Lisa Michaels says the risk of storms is lower this morning, but severe storms will be likely this afternoon and evening. 

    Today is a First Alert Action Day. Parts of the Heartland were upgraded to a moderate risk of severe weather. Lisa Michaels says the risk of storms is lower this morning, but severe storms will be likely this afternoon and evening. 

  • Trending StoriesTrending StoriesMore>>

  • SC dentist who gave millions cavities with 'In My Feelings' challenge shares thanks in latest post

    SC dentist who gave millions cavities with 'In My Feelings' challenge shares thanks in latest post

    Monday, July 23 2018 12:53 AM EDT2018-07-23 04:53:09 GMT
    A South Carolina dentist has officially won the Drake-inspired  "In My Feelings" challenge and the ladies of the internet are letting it be known that they must go to the dentist immediately. (Source: Constantine Dental/Facebook)A South Carolina dentist has officially won the Drake-inspired  "In My Feelings" challenge and the ladies of the internet are letting it be known that they must go to the dentist immediately. (Source: Constantine Dental/Facebook)
    A South Carolina dentist has officially won the Drake-inspired  "In My Feelings" challenge and the ladies of the internet are letting it be known that they must go to the dentist immediately. (Source: Constantine Dental/Facebook)A South Carolina dentist has officially won the Drake-inspired  "In My Feelings" challenge and the ladies of the internet are letting it be known that they must go to the dentist immediately. (Source: Constantine Dental/Facebook)

    A South Carolina dentist has officially won the Drake-inspired  "In My Feelings" challenge and the ladies of the internet are letting it be known that they must go to the dentist immediately.  

    A South Carolina dentist has officially won the Drake-inspired  "In My Feelings" challenge and the ladies of the internet are letting it be known that they must go to the dentist immediately.  

  • Mom rescues daughter held against her will with help from social media

    Mom rescues daughter held against her will with help from social media

    Friday, July 20 2018 3:23 AM EDT2018-07-20 07:23:17 GMT
    Chameka Mengistu. Credit: KMOVChameka Mengistu. Credit: KMOV

    Chameka Mengistu says she wants what could have been a tragedy for her family, to serve as a warning to parents.

    Chameka Mengistu says she wants what could have been a tragedy for her family, to serve as a warning to parents.

  • Trump fires off explosive threat to Iran's leader

    Trump fires off explosive threat to Iran's leader

    Monday, July 23 2018 12:35 AM EDT2018-07-23 04:35:01 GMT
    Monday, July 23 2018 6:05 AM EDT2018-07-23 10:05:42 GMT
    President Donald Trump is warning Iranian President Hassan Rouhani that he will face dire consequences for threatening the United States. (Source: @realDonaldTrump/Twitter/CNN)President Donald Trump is warning Iranian President Hassan Rouhani that he will face dire consequences for threatening the United States. (Source: @realDonaldTrump/Twitter/CNN)

    Trump has a history of firing off heated tweets that seem to quickly escalate long-standing disputes with leaders of nations at odds with the U.S.

    Trump has a history of firing off heated tweets that seem to quickly escalate long-standing disputes with leaders of nations at odds with the U.S.

Powered by Frankly