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…
Given how much I loved movies, playing make-believe, and any kind of storytelling, it’s no surprise that I had a desire to get on stage early on. Before my elementary school started its drama club, I acted in church plays, put on my own productions at…
When I first started writing this column, I wasn’t sure what to say. I have a list of potential topics that I’ve been adding to sporadically, but nothing really jumped out at me. You’re probably tired of hearing about my headaches. To be frank, I’m…
Over the past weekend, pictures from the annual candle lighting for SMA that took place on Aug. 11 inundated my social media feeds. As most of our community knows, this lighting represents the lives lost too soon to this debilitating disease and those who are still living in spite…
Kids grow … and Ella’s right there along with them. Since her spine surgery, Ella has gained a bit more than 5 inches in her height. And every three months, she gets her spine rods lengthened. She sits tall and straight in her wheelchair, and…
