I’m a lot of people’s favorite something. That’s not bragging, it’s just a statement of fact. Ask my mother who her favorite child is, or some of the nurses at my usual hospital’s neurology ward who their favorite patient is, or some of my friends who their favorite friend or…
Columns
My younger brother, Kevan, and I were both diagnosed at a young age with SMA, so we grew up with power wheelchairs and powerful imaginations. We lived most of our childhood in our own pretend play world, where we could be spies, horse farmers, and baseball players; we…
“Do you remember when Dad took us kite flying?” I asked my brother, Gabriel. We were on a train ride home from the Sands Theatre, where we’d just seen an international production of Disney’s live musical, “Beauty and the Beast.” “Nope,” he said. “I thought that was with the…
My goal in college was to become a special education teacher. I had a dream work-study job at a nearby elementary school, assisting in two special ed classrooms. My career plan derailed slightly when I married, moved, and resumed studies at a university without a special education department. Several years…
For the past two years, my friend Pam and I have attended Night to Shine, a special prom event held in cities around the world on the same night, created by the Tim Tebow Foundation to celebrate and honor people with disabilities. This year it takes place on Feb.
If you’ve read at least a few of my columns, you know that I hold on tightly to hope. It’s what keeps me plowing through the rough terrain of problems and crises, as my faith tells me that, one day, many of these difficulties will be solved. Now, it seems…
“Are you kidding me?!” Mandy’s wide eyes and dropped jaw expressed her genuine shock. Chelsea and I were discussing our recent frustrations with inefficiency and a lack of dignity in disability services, such as hospital care, wheelchair repair, and insurance policies. Chelsea chuckled, and I shrugged my shoulders. Nope, we’re…
It’s been almost a year since I moved into my new house, and I’m still working to get everything the way I want and need it. I’ve always loved warm temperatures. As long as I stay hydrated, the warmth has a special way of soothing my soul. This is…
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…
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…
Recent Posts
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- MDA 2026: Trio of trials now testing Spinraza successor salanersen for SMA
- Spinraza treatment improves motor function for adults with SMA: Study
