How Illinois Bureaucracy Robbed Parents Of A Chance To Save Their Children From A Deadly Disease

Robin Maubach, who lived in Washington, Ill., wondered if something was wrong with her son, Dylan. The first sign was a head tilt, a condition that physical therapy couldn't solve. Then there was Dylan's fussiness, which the pediatrician treated as reflux.

Dylan initially met his early milestones, but his mother, a first-grade teacher mindful of child development, soon began to worry. Dylan's older brother sat up at 6 months; Dylan reached that age and never did. When he was 9 months old, Dylan stopped feeding himself.

At first doctors diagnosed Dylan with cerebral palsy. A visit to Children's Hospital of Illinois in Peoria led to the Krabbe diagnosis when he was 14 months old.

Like Spencer, Maubach took her son to the Krabbe expert in Pittsburgh to see if he could have a transplant.

But it was too late for Dylan too.


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