Parents Who Lost Children to Rare Disease Slam the State

In Chicago, a panel of lawmakers and parents are fighting back after the loss of children to a rare disease.

Shermane Jenkins lost her two-year-old son to the very rare Krabbe disease, also known as globoid cell leukodystrophy. It’s a degenerative disorder that affects the nervous system and it’s caused by the lack of an enzyme called galactosylceramidase. To learn more, click here.

Soon after Logan died, Shermane learned that he was supposed to have been tested for this rare disease at birth, but irresponsibly wasn’t. Shermane begged and sobbed at a hearing at the Illinois State Capitol, asking them to pass this necessary test at birth.

Calling this hearing was State Rep. Mary Flowers in response to a report in the Chicago Tribune that revealed Illinois hasn’t implemented statewide testing for Krabbe disease at birth. In 2007 a law was passed that required these tests to go through by 2010. People have been disregarding the law.

But Shermane is not the only person who lost a child to Krabbe. Scott Hammonds lost his son Liam and joined the argument by testifying at the same hearing.

At the hearing, Hammonds laid down the law and spoke about how one in 150 people are carriers of Krabbe and that it needs to be detected early on. Illinois Public Health Director Dr. Nirav Shah wants to see this testing go into effect by the end of the year.

Why hasn’t testing begun yet, after all of these deaths? It has to do with paperwork. There are delays in a contract for second-tier testing. That’s the kind of thing that can make your blood boil.

In defense of some of the practices of his predecessors, Shah said:

“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.”

So in the end, it seems like children are dying because lawmakers aren’t putting enough effort and time into a fatal issue.

The hearing will reconvene in January, where Flowers demands Shah to come back when testing has begun.

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