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The 'Firsts' My Family Faced Navigating Rare Disease During COVID-19

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I wish someone could have written me that note. To know the end of the story, a year ago, would have made my life as a mom of someone with a rare disease a lot less stressful.

A year ago is when COVID-19 started for most of us. I started our COVID experience in a crisis. I got a call on March 13 at 6:30 a.m.

from paramedics at my daughter’s apartment, an hour and a half from me. “Are you the mother?” He went on to introduce himself, very business-like, and I remember thinking… get to the point. “We are with your daughter here and she’s not responding to us.” I started asking questions and pulling on clothes with one hand, hopping to pull pants on, still talking.

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