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Dylan Maubach, son of Ian and Robin Maubach, and baby brother to Anthony Maubach, was diagnosed about a year ago with Krabbe disease. Dylan was born in Illinois in July 2011, and was hitting all major milestones until around seven-eight months of age. He was rolling over and feeding himself, and almost sitting up unassisted. It was then Robin and Ian noticed that he slowly stopped rolling over, and stopped feeding himself. They took him to the doctor, where they were assured he was normal, and just possibly a bit delayed. Time went on, and Dylan was still missing major milestones and the skills he had acquired early on, he lost. He could no longer feed himself or roll over. Robin and Ian grew more concerned. Dylan started physical therapy, and Robin and Ian were told he may have cerebral palsy, but an MRI showed later showed this was not the case. In October, Dylan went to the doctor for a bad cough, it was noted he had lost weight, and was admitted to the hospital and labeled as "failure to thrive". After a 5 day stay in the hospital, complete with many, many tests a preliminary diagnosis was made. A few weeks later, a confirmed diagnosis of Krabbe disease was made. One in 100,000 babies are born with this disease annually. Only four states routinely test for this disease and if caught at birth, a cure may be possible. Unfortunately, Illinois is not one of the four states that routinely tests for Krabbe. The average annual cost of a child with Krabbe disease is $700,000. Insurance will pay around 80% of that. Robin and Ian will be responsible for the rest. Please help us raise awareness of this awful disease by sharing this page, and if able, participating in our fundraiser.
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