A few days ago, I received my 17th injection of Spinraza (nusinersen), one of several SMA treatments approved by the U.S. Food and Drug Administration. Every four months, I go to the hospital for a maintenance dose administered via a cervical injection. When I started this process…
No matter how hard I try, there are things I continually forget. Take, for example, the few times I’ve hosted parties. I’m an introvert through and through, so hosting isn’t exactly my forte, but I love spending time with friends. I was so excited for my very first dinner party…
Here comes the latest adventure in the saga to remove my kidney stones. Spoiler alert: I came close to leaping over the hurdle of getting the surgery done. Unfortunately, though, I didn’t quite make it to the operating room. Relax. The reason had nothing to do with me.
In my mind, Luke Skywalker was in love with me. For context: I was never much of a Lego girl. But I was a “Star Wars” girl. It stood to reason, then, that the Lego Star Wars games were right up my alley. I loved everything to do with…
My mom and I enjoy treating ourselves to a relaxing afternoon of mother-daughter bonding at the nail salon from time to time. We don’t have one specific salon that we always go to. While there are some that we like better than others, we often pick one that’s in an…
For most of my teenage and early adult years, I had big dreams of working in fashion. As a creative person, the behind-the-scenes work always intrigued me the most. I loved the process of concept to creation, the thought that went into the garments, what inspired the…
April brought with it more than showers in the water department. Our son Matthew and his family visited our daughter and son-in-law, Katie and Paul, on Easter weekend. Besides the beach, they had access to a nearby swimming pool. As our granddaughter Clara, 6, dipped her toes into the pool,…
As you get older, proper rest tends to become an appointment you have to schedule. It’s something you have an abundance of when you’re an infant, but its presence steadily decreases in your life once school, work, and social engagements take up increasing space. I’ve witnessed this phenomenon among my…
I correspond with a number of friends and acquaintances in the SMA community on a regular basis, but mostly through social media and work. However, there is one friend I met at a conference in 2017 who is a bit of a maverick. Mike has no social media presence…
When it comes to healthcare, I’ve had remarkably good luck. There are, of course, bad apples. See, for example, the gastroenterologist who rambled about “The Odyssey” as he punctured my stomach lining. Or the surgeon who, in my young, still-developing mind, undeniably had it out for me. (A classic…
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