“It’s Dr. Emily’s relentless effort to stop Batten disease in its tracks that’s given our daughter a quality of life we didn’t think was possible when she was first diagnosed. I just want to hug her every time I see her.” -Tayla’s Mom #WomenInScienceDay | Nationwide Children's Hospital
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Batten Disease
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Ellery is diagnosed with a progressive and terminal disorder known as Batten disease. This deadly disease takes away a child’s ability to walk, talk, speak, and see. As of now Ellery is still able to say a few words like “Mickey” and “Twinkle” but her parents know this will not last forever. Ellery’s mom wants the world to know that they try to focus on the joy but Batten disease is forever destroying a part of their family. | Special Books by Special Kids
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