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Jan. 26, 2021

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Erica Barnes, Minnesota Rare Action Network Volunteer Ambassador

Posted by Sean Roberts

Newborn Screening

When my daughter Chloe was diagnosed with metachromatic leukodystrophy (MLD), doctors had to rely on the signs and symptoms of the disease to make the diagnosis. But as MLD is an aggressive neurodegenerative disorder, it is crucial that children be diagnosed before symptoms appear in order to have any chance of stopping its progression. Chloe passed away from the

disease and for me, newborn screening represents these children’s only hope for identifying this genetic disorder in time to intervene. Advocating for newborn screening gives me a chance to rewrite the ending to the story of diagnosis and treatment for children like my daughter.