I’ve been an active member of the SMA community for years, but one of my fondest memories from any SMA conference took place last year in Dallas, Texas. As I chatted with my friend Doug, another friend’s 5-year-old daughter joined our conversation. Her…
In case you missed it, I skipped writing a column last Friday. I wouldn’t say it was by choice, even though one could argue that technically I requested the week off. If it had been up to me, I would have written that column. I would have…
I previously wrote a column about body modifications and how my favorite kind is tattoos. When I think about it, I’ve been in to get tattooed every year since graduating high school. Well, every year except for this one — so far. There’s still time. On…
For our summer vacation, my family and I decided to take a trip to Ontario, Canada, to see Niagara Falls. Most of us had never been, and I had never traveled out of the United States. We walked by the falls, took a trip to the top of the…
With the annual Cure SMA Conference having recently wrapped up, the topic of travel has once again leaped to the forefront of discussion in the SMA community. The conference was on the West Coast this year, close enough for me to drive to. I attended the 2016 conference, also…
Like most families broadsided with an unexpected, rare diagnosis, my husband and I had never heard of the one attached to Jeffrey, our third baby. Spinal muscular atrophy (SMA) was completely foreign to us, so it came as another shock to learn that SMA was the leading…
Ella turned 9 years old in June. We have noticed lately that she is gaining too much weight. We’ve had Ella on the amino acid (AA) diet since she was 20 months old. Over the years, we’ve made many adjustments to the diet in terms of ingredients, volumes,…
We see a lot of articles addressing SMA and dating, or dating when an individual is in a wheelchair. I’ve had little to no experience in dating. I had a boyfriend when I was in middle school, but that was more of a “Well, everyone…
“So, do you sleep in your wheelchair?” Believe it or not, I have been asked this question more than a few times. Granted, I don’t recall hearing it after I finished middle school; but even then, the fact that any kid thought this was the case…
As I write this column, only 11 days are left before my nonprofit organization hosts its 10th annual gala for spinal muscular atrophy. Eleven. And while 11 has always been my lucky number, as I glance at my to-do list I’m reminded there really isn’t anything lucky about it…
