Dairy Queen Ice Cream Cake. A Cabbage Patch doll. Brush-tipped markers and a slime kit. A diary and a special drinking glass (filled with Hershey’s Kisses). All the goodies Ella received on her 8th birthday. It’s hard to believe Ella is 8 years old…
Columns
Dancing on Wheels
With my SMA, one might think that pretty much any kind of physical activity is out of the question for me. I use a power wheelchair, have severely limited use of my arms, I struggle to turn my head to the side, and if my driving…
I’ve been struggling to get back into the swing of things now that my friends are gone. And not just with schoolwork, either. Basically, anything that isn’t Dungeons & Dragons, “National Treasure,” or self-insert role-play is having a hard time keeping my…
My father once made a promise to me as a little girl. I had been in the hospital’s intensive care unit for yet another respiratory infection, and he wanted to give me an incentive to get better. I’ve always operated best when having a goal to attain, and…
Coffee and Mexican food: These are two of my greatest loves, and I once again enjoyed them today, the day I celebrated the one-year anniversary of my best friend Sam’s move to Bend, Oregon. The original plan was for Sam to live here to help with my care…
Ella loves playgrounds despite being in a wheelchair hindering much of what she can do there. The area of the playground she has always gravitated toward is the swings. However, she has been restricted to the type of swing that “buckles” the rider in for safety,…
As I’ve written in previous columns, my college years were some of the best years of my life. I discovered my passion for journalism, made lifelong friends, became more independent, and most of all, I acquired the perfect nickname: Schaef-Dawg. Credit to my former…
My Amtrak Experience
I’d like to preface this piece by giving a shout out to one of our very own columnists, Brianna Albers. Brianna shared her experience with Amtrak on SMA News Today last year and was incredibly kind in answering all of my questions and easing my…
The internet is a valuable tool for someone like me, especially for the purpose of social platforming. I can’t do much socializing in real life. Whether the environment is too loud for me to be heard, the venue is inaccessible, or the activity is something that I physically can’t…
Wheels for Ella
Summer is here and in full force. Ice cream trucks, sprinklers, and lazy days abound. Bike riding also tops off the season. Ella can now join in a way that she couldn’t do before! Through the generosity of the Jonathan Goers Bike Club and the coordination of…
Recent Posts
- When fate tested our theory that things happen for a reason
- Evrysdi boosts motor function, quality of life in Asian SMA patients
- Learning to resolve conflict with friends who are also caregivers
- Simple nerve signals may help track disease progression in SMA
- Brain, breathing issues drive sleep problems in SMA: Study
