Infant testing delay costing lives

Posted: Updated:

SPRINGFIELD, Ill (WAND)- A crucial test for newborns babies isn't being done in Illinois despite becoming law in 2007. 

Former Governor Rod Blagojevich, signed the law in 2007, however 10 years later babies are still not being tested for a  deadly disease called Krabbe. A report by the Chicago Tribune first revealed that the testing program had yet to be implemented. The report drew the attention of Representative Mary Flowers, (D-Chicago), who called a House committee Wednesday to learn more. 

Nirav Shah, the Director of the Illinois Department of Public Health said it was "shameful" that the program had yet to be implemented in Illinois, but it was not one persons fault. The law required for testing to begin in 2010, but Shah said when he took over the department in January 2015, implementation was only at 25 percent. While he maintained that getting Krabbe testing implemented in the state was a top priority for the department, that was of no solace for the parents of children who have died or are dying from Krabbe disease. 

"By the time I received that information it was too late. As a parent, I had to watch my son pass away. You never know when it's going to happen, and I feel like this new born testing can save lives." said Shermane Jenkins, who lost her son Logan from Krabbe Disease. 

Jenkins shared her heartbreaking story with the committee of losing her son to a disease she never heard of. "By the time I made it to the hospital, on June 20th, Logan died in my arms on the Christ Hospital elevator," she described through tears "When I made it to the back of the emergency room and laid him down, he was just restless and out of breath, as they tried to perform was only 15 minutes and they told me there was nothing they could do for him." 

Krabbe disease is a rare degenerative disorder that affects the nervous system. It is caused by the shortage of an enzyme. Symptoms of Krabbe disease usually begin before the age of 1. While there is no cure for the disease, detection at time of birth, can greatly improve survival and quality of life for those who have the disease. 

Illinois parents are now pleading with the Illinois Department of Public Health to implement the test so no more parents will have to go through what they did.

"Please allow other families the opportunity to save their children. Something we were not given."  said Laura Shelton, who has a daughter with Krabbe disease.

"Please get it up, get it rolling. Save some kids." said Scott Hammonds, whose helped created the law after his son died from the disease.

Shah said the testing should be ready by the end of the year.

Current Conditions