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May. 2, 2022


Erica Barnes: Hopkins, Minnesota

Posted by Sean Roberts

My daughter passed away from a rare disease. Finding a specialist or caregiver with any knowledge of her disease that could provide informed care was difficult, but fortunately I live in a metro area with access to academic centers. I now advocate for other MLD families following the death of my daughter, and so many of them do not have a local clinician that can care for their medically complex children. In order to receive care, they must travel hours to an academic center. Telehealth allows them to do some of their appointments locally.