CAMPBELL, MO (KFVS) - A Campbell couple is frustrated and disappointed after a Missouri law named in their son's honor may have hit a bump in the road.
Brady Cunningham died in 2009 of a rare disease, just shy of his first birthday. His parents immediately went to work to get a state law passed that would potentially save other babies.
The big question is whether that will still happen.
Three years have passed, and the pain is still there.
"You still think about him everyday," said Dustin Cunningham-Brady's Dad.
Brady Cunningham was born in April of 2008. Doctor's diagnosed him with Krabbe Disease, which is a genetic disorder that attacks the nervous system.
"He only lived 11 months," said Jessy Cunningham-Brady's Mom. "There is no cure right now, but if this is detected at birth there's a possible cure."
"We started a petition and next thing we know we were shaking Jay Nixon's hand," said Dustin Cunningham.
Brady died on April 6th, 2009. That July the Cunningham's enjoyed victory as the Governor signed "Brady's Bill". It requires an expansion of newborn screening requirements for five lysosomal storage diseases like the one that took little Brady's life.
"Now knowing they're trying to take this away from him and future babies it's heart wrenching," said Dustin Cunningham.
He fears a tight budget could leave the testing unfunded due to re-appropriations.
The Cunningham's just want answers, and their son's legacy to live on.
"It's just hard for us to deal with right now, but we've got to because we've got to look after other parents and their potential children," said Dustin Cunningham.
They're hoping others would just for a moment put themselves in their shoes.
"How would you feel if your child you spent a month in the hospital and doctors called you in and said, we don't know how long your child has to live," said Jessy Cunningham.
Brady's Bill is slated to take affect in July of 2012.
According to State Representative Kent Hampton there is plenty of confusion right now on how the testing will be funded. He says the appropriations bill, House Bill 2010, passed the House and is now in the Senate.
According to Senator Jason Crowell the screening will be funded.
He says it appears the concern is with those who don't want the funding funded via the trust fund set up for the testing.
He believes supporters of this bill want the state to allow the trust fund to still get the fees, but pay for the screens with general revenue.
We should know more in the coming weeks how or if the testing will be funded.
Meanwhile, the 2nd annual Brady Alan Cunningham three-on-three scholarship tournament will be held on Saturday April 21, 2012 at the Campbell High School gym. All proceeds from the event goes to a Campbell senior.