The last column I wrote was about waiting for our bathroom to be remodeled so that Ella can have privacy and dignity. We’re happy to announce that this modification has been completed and Ella loves the new bathroom. Each time we do a project allowing for greater independence, privacy,…
My life is full of medical appointments, and they all tend to be fairly inconvenient. Necessary, but inconvenient. I can’t attend them on my own because, well, I can’t drive or take care of myself. So, my mom ends up having to take a day off work…
Since I started receiving my Spinraza (nusinersen) treatments in November 2017, my energy level has skyrocketed. Often, I don’t even realize just how good I feel now. Then I think back to when I was a teenager, struggling with sleep apnea…
Dear Mom and Dad, In the wake of FDA approval of Zolgensma, jubilant feelings soar like a kite, beyond the boundaries of wonderful to the highest altitude of hope. Mom, we recently had lunch together and chatted about new SMA treatments and their incredible impact on SMA families. You…
If you’ve been keeping up with my column, you’ll know that my parents and I are essentially living in a no-fly zone (only our closest friends are allowed to visit because the house is a mess and also probably a health hazard). There…
As I was staring at a blank screen preparing to write this column, my little cousins Jackson and Mackenzie, who are 8 and 6 respectively, were playing with my nephew’s motorized car in my living room. Our fathers were on the back porch having a drink…
As someone living with SMA, I rely on various machines and medical equipment to function and stay alive. While I’ve never been blind to this, I often take my situation for granted. Occasionally, however, an incident occurs that snaps me back to the reality of my fragility. Last week, my…
We had no reason to doubt that our third baby, Jeffrey, would be healthy. Our other children, Matthew and Katie, were in good health, and any known “premature” deaths in our families were attributed to miscarriage. And then SMA entered the picture. We said hello and…
Ella is growing up. She just turned 9 on June 10 and will be entering the fourth grade this fall. Her mind is as sharp as a tack. She’s starting to understand sarcasm and the ways it can be used. She is expanding her friendships to include a variety of…
SMA comes with a lot of challenges. The progression of the disease is the worst — at least, in my experience. About a year to 18 months ago, I finally had to accept the fact that I just couldn’t drive my electric chair anymore. Honestly, I probably shouldn’t have…
