We all know that I hate getting up early. Just like I hate adjusting to a new wheelchair — I’ll do it if I have to, but that doesn’t mean I won’t complain about it. So you can imagine my dismay when my caregiver sent me the most dreaded…
I was once a rare traveler wandering the countryside. On my shoulders, I carried a basket of artifacts and relics. Each piece correlated to moments in my life when I’ve felt something within my heart — things both small or grand, benevolent or wicked — falling deep and deliberate like…
Wouldn’t it be wonderful if we could easily put into practice the lessons we learned growing up? We were taught to think about the effects of our decisions, but sometimes it is difficult to know how our actions may affect the lives of other people. For those of us with…
It is my yearly Chinese New Year tradition to complain about Chinese New Year. As with all honored traditions, this one goes back to my earliest memories of the holiday: My mum’s footsteps echoing throughout our house as she cooked breakfast before the sun rose. The…
When it comes to “Lost,” you either hate it, love it, or don’t get why people feel so strongly about it. I’m in the second camp, which is to say I feel strongly about the groundbreaking and controversial TV show. The writer in me is obsessed with everything from the…
It’s been 10 years since my last hospitalization. I’ve waited a long time to be able to say that, because I’ve never been able to say it before. This is a feat of epic proportions for someone with SMA. It’s even crazier when I reflect on the prognosis from my…
Recently, in the SMA News Today Forums, a handful of members shared that they were embarking on new treatment journeys with both Spinraza (nusinersen) and Evrysdi (risdiplam). Reading such posts makes me feel a level of happiness I don’t often feel for strangers on…
I could tell you this year has been difficult for me, and I’m certain you’d reply with a swift hitchhiker’s thumb and a comment to the effect of, “Yeah? Welcome to reality. Back of the line, lady.” A perfectly understandable response. To your point, I’ll quietly make my way to…
Oct. 6, 1997. My husband, Randy, and I snagged a last-ditch effort to save our baby Jeffrey from spinal muscular atrophy’s deadly vise: meeting with a pulmonologist who was trying gabapentin on another young child in North Carolina. We were desperately eager to learn whether or…
I looked at the faces on my computer screen and saw just a snippet of the SMA community. People from different locations, different cultural backgrounds, and with different types of SMA were gathered for a Cure SMA virtual book club, which I had…
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