Kids and adults alike love to ride bikes. Exercise, travel and autonomy sprout from the experience. For a person with SMA, the experience easily can elude them. Their legs aren’t strong enough to move the pedals, their balance isn’t sufficient to master the task…
Green Arrow costume, image provided by Kevin Schaefer October is one of my favorite times of the year, and not just because it’s my birthday month. Call me childish, but I never grow tired of the creative Halloween costumes, the festivities, scary movies and the buckets…
I have always struggled with my voice. Spinal muscular atrophy (SMA) causes muscle degeneration and weakness. In this case, it means that my voice is quiet. Soft. And not just my voice, either. People rarely notice when I sneeze, because it’s such…
The trip to downtown Chicago takes but an hour for us, as we make our biannual trip to Lurie Children’s Hospital for Ella’s clinic. This one was an eye-opening experience. Every six months, the neurology, pulmonary and therapist team members get together…
A couple weeks ago I was out with some friends from college for a trivia night at a local brewery. My friend Russ gave me a ride, and as we approached our destination the clouds covered the sky, culminating in a stormy display like something out of…
In continuation of  last week’s column, here are three more things you can try that might help with depression. They’re all things that have made a difference in my life, so I hope they may be able to help you, too. Don’t…
Birthdays take on a slightly different meaning around here. At this time every year, I think about a story my mother once told me about the first birthday I celebrated and wonder how painful and heart-wrenching it all must have been for my family to process. Although I’ll…
The middle child holds a special place in everybody’s heart — they’re the peacekeeper, the negotiator, the one most likely to feel overlooked. Henry fits the bill to a T. He is Ella’s older brother and Ava’s younger one, and he seeks acceptance from…
In a few days I’ll be 24, and every year my birthday is accompanied with at least some sentimentality. I hate being sappy, and anytime I reach a milestone it’s usually followed by an emotional speech by one of my parents. At my college graduation party last…
It’s easy for me to hide behind a computer screen and tell you that it gets better. To believe that it gets better – yet still wake up every morning with an unbearable sense of … dread. Exhaustion. Never knowing what’s going to happen, and trying…
