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Two Bright Lights: Jeffrey and Papa

I’m writing this on June 29, the 13th anniversary of my father’s death.    Remembering Dad today is impossible without including Jeffrey in my thoughts. Following his death, our family was reassured by one sign in particular that he had wasted no time in…

Preparing for the Plastic Apocalypse

I have to start preparing for the plastic apocalypse. Yes, I may just have to start hoarding plastic bendy straws and forks. And also hopefully never get caught with them. (She says to the entire internet.) Or ever run out. I get it: We want to be eco-friendly. Save the…

My Continuing Journey Toward Treatment

The U.S. Food and Drug Administration (FDA) recently announced the approval of Zolgensma (onasemnogene abeparvovec-xioi), the first-ever gene therapy to treat SMA. This amazing news has thrilled the SMA community with its possibilities! Zolgensma opens new doors for increased strength, resistance to illness, and longer lifespans. As…

The Struggle of Getting Medical Equipment

My life is full of medical appointments, and they all tend to be fairly inconvenient. Necessary, but inconvenient. I can’t attend them on my own because, well, I can’t drive or take care of myself. So, my mom ends up having to take a day off work…