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Interpreting Signs of a Feather or Two

Our sweet third baby, Jeffrey, arrived on a sunny May morning. Two months later, spinal muscular atrophy barged into our world. Hearing the prognosis of death before kindergarten was akin to being pummeled by a raging bull on one side and a tornado on the other. It snatched the proverbial…

As Someone With SMA, the Fight for My Life Never Ends

It’s become a sort of ritual. Once every few weeks around 3 p.m., my mom will drop by my room. “So,” she’ll say, with ridiculous amounts of forced brightness. “So.” Code word for “We need to talk.” Code word for “I just checked the mail, and you’re not going to…