I’m not exaggerating when I say that SMA requires you to plan ahead for everything. If I don’t carefully coordinate each day with my caregivers, I can’t even go to the bathroom. Fortunately, I usually can plan for a daily occurrence like that, but other things are more complicated…
Ella watches Henry go out with his friends. They start at one house and easily move to another while riding bikes, walking, or riding their scooters. Ella gets jealous. She wants to be able to go to a friend’s house and play, too.
In most superhero comics, movies, and TV shows, there’s usually an arc at some point in which the hero temporarily loses his or her powers. This happens in “Spider-Man 2,” “Supergirl” (season two), the first “Thor” movie, and in issue 12 of the comic book crossover “Crisis…
It’s difficult to fit in when you have SMA because you are one of a kind. The reality is I’m never going to fit in perfectly anywhere, but I haven’t done myself any favors for most of my life, either. In my younger years, I didn’t have problems with fitting…
School has started. Ella loves school. She’s one of those kids that adore playing school over the summer just to keep it alive for herself. She’s now in the third grade and loves it even more than last year. Because of…
As a lifelong SMA patient, the sheer number of people on my healthcare team rivals the size of my immediate and extended family combined. Keep in mind that I come from a southern family with multiple cousins, aunts and uncles, grandparents, and even a couple of…
I’ve had a Spinraza consultation set up for a few months now, and was able to squeeze in a neurological evaluation during the appointment. The CT scan of my sinuses came back clean, and the ENT specialist suggested I see a neurologist about a…
For a good chunk of last year, I dreaded when people asked how I was doing. To an extent, I understood their logic. They were genuinely curious about my well-being, and showing their concern showed that they cared. But the truth was that I wasn’t doing all…
Time to get up My day begins like this: I wake up and call my caregiver (these days, it’s usually my grandmother or my friend, Sam), who turns off and disconnects my machines. I have a breathing machine called a BiPAP, a feeding pump, and an oximeter,…
Aug. 12, 2011. One day after our fifth wedding anniversary. Ella’s D-Day — diagnosis day. No treatment. No cure. At the time, we suspected SMA as Ella’s official diagnosis, but it wasn’t until Aug. 12 that we received…
