“There are no treatments, no cure. DNRs and wills are in place. They have been for years, as any moment she could be taken from us.”
Original source: https://www.huffpost.com/entry/mother-daughter-rare-disease-siod_n_66e1e207e4b000d8c534eb9a
My 21-Year-Old Daughter Was Not Supposed To Live This Long. Here’s How I Keep Us Both Going.
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