Columns

On Finding the Right Healthcare Team

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…

Walk with Me for a Day (Pun Intended)

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,…

How Theater Helped Shape Me

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…

Writing My Way Out

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…

The Power of Social Media in the SMA Community

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…

Two New Sets of Wheels for Ella

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…