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Parents Of Kids Who Died Of Rare Disease Slam State For Not Testing As Required

CHICAGO (CBS) -- A panel of lawmakers - reacting to a Chicago Tribune story - wants to know why the state let children die because it never enforced a 10-year-old state law requiring newborn screening of a rare genetic disease.

Early detection, perhaps followed by stem cell treatment, can help children survive Krabbe disease, a degenerative nervous system disorder.

Shermane Jenkins lost her son, Logan, to Krabbe disease when he was only 2, before she learned he was supposed to have been tested as a newborn.

"As a parent, I had to fatally watch my son pass away, and I feel like this newborn testing could change a lot. I could have the ability to control what my son has, the tests he gets. I just ask of you and beg of you to please, just please, just please," she said, sobbing as she testified at a hearing at the Illinois State Capitol on Wednesday.

State Rep. Mary Flowers (D-Chicago), chair of the Illinois House Health Care Availability and Access Committee, called the hearing in response to a Chicago Tribune report that revealed Illinois has yet to implement statewide testing for Krabbe disease, despite a 2007 law requiring those tests by the end of 2010.

Scott Hammonds, whose son, Liam, also died of Krabbe, also testified at the hearing into why the state ignored its own law and never launched newborn screenings for the disease.

"One in 150 people are carriers of the Krabbe gene, and early detection is the key to treatment of Krabbe. Parents need to know why their child is sick. Better yet, they deserve to know, and they deserve the chance to say how their child will be treated," he said.

With other grieving parents behind him, Illinois Public Health Director Dr. Nirav Shah told Flowers he wants testing for Krabbe disease in place in Illinois by the end of the year.

"When positives are identified by the IDPH lab through enzymatic analysis, those positives will be sent to the Mayo Clinic for confirmatory or so-called second-tier testing," he said.

Flowers said, "That is garbage."

"I don't want to hear it," she added. "Let me make it plain and clear, and if you feel like you're being violated and disrespected, I really don't give a damn."

Part of the reason testing hasn't begun yet in Illinois has been delays in a contract for second-tier testing. The first round of tests at birth can yield false positives, so any positive samples undergo a second more intensive test.

Shah tried to defend to State Rep. Melissa Conyears-Ervin (D-Chicago) some of the practices of his predecessors.

"I believe that the expert advisory committee that was convened in 2008 that contains the leading experts in the state of Illinois made the correct decision to endorse and require the department to do second-level testing. To do otherwise I think could jeopardize health access," Shah said.

"At the same time, we have children that are dying, because there is no testing at birth," Conyears-Ervin said.

Flowers told Shah to come back in January and tell her testing is going on.

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