SMA doesn’t usually make headlines unless the person affected is famous. When Jesy Nelson, former lead singer of Little Mix, shared that her newborn twin daughters had been diagnosed with SMA, global attention followed. Entertainment outlets covered the story widely, social media filled with messages…
Columns
My husband, Randy, and I had never considered leaving our hometown of Fort Worth, Texas. That all changed when Randy received an unexpected coaching offer in South Carolina. With little time to prepare for such a major life change, we soon found ourselves relocating to Columbia. In Columbia, my teaching…
The Lights, Camera, Action! attraction at Universal Studios Singapore was just as I remembered it. Without missed or delayed cues, fans blew harsh winds, sprinklers rained, sound effects thundered, lights flashed, and a ginormous boat barged in — all to simulate how a special effects team could recreate…
This January has been exceptionally and brutally cold! As a summer girl, a sun chaser, and an adult with spinal muscular atrophy (SMA), there are so many reasons why winter is my least favorite season. The cold tightens my muscles, it is all too easy for me to get…
This post contains spoilers for the final season of Netflix’s “Stranger Things.” My level of devotion to the Netflix series “Stranger Things” dates back to the show’s premiere in the summer of 2016. As soon as the first season dropped, I was hooked. As a love letter to…
Lately, I’ve been asking myself whether what I have right now is truly enough to carry me through the hard seasons. It comes as the New England Patriots are heading to the AFC championship game. For a lifelong fan like myself, it has been an exciting season to watch, with…
When you live many years with a disability like spinal muscular atrophy (SMA), as I have, you get used to pain and discomfort being a part of your life. My pain isn’t as severe as that of some people I know, so I’ve never needed long-term treatment for…
Last year sprinted to the finish line at breakneck speed. I couldn’t have stuffed much more into December’s calendar. Wrapping presents, finishing intense seasonal activities and mandatory year-end tasks, fulfilling copious obligations, and escaping to Charleston, South Carolina, for a delightful family getaway left no calendar square unscathed. Due to…
I recently returned home from a seven-week holiday at my parents’ house. It’s become my annual tradition, and for a lot of reasons. It gives me a good chunk of quality time with my family, and the weather in the South is usually at least 10 degrees warmer than it…
Note: This column was updated Jan. 29, 2026, to clarify the usage of Medicare and Medicaid. I knew things would change when my mom retired. For one thing, there was going to be a whole third person hanging around our house; for most of my life, it was just…
