A Peek Inside ‘Ava’s Wink Club’
“Get off the pillow!” screamed Ava. “It’s my pillow. You get outta my room!” yelled Ella. “You wanted me in here…” argued Ava. “Well, now I don’t, so GET OUT!” screeched Ella. It’s a game of…
Columns
Rolling Through Disney: The 2017 Cure SMA Conference
There was a period when the last thing I wanted to do with my summer was spend time with other people who have SMA. As a moody, cynical teenager, I really couldn’t care less about engaging with any kind of disability community. I wanted nothing more than…
I Broke Up with Apple, and Here’s Why
I’ve been an Apple user since my senior year of high school. And before that I was an iPhone user — and before that, an iPod user, and by iPod I mean the literal brick that was the first generation iPod Classic. Apple…
A Helping Hand from a Youngster with SMA: From Painting to Physical Therapy
The nature of SMA Type 2 makes everyday tasks difficult. Brushing teeth, getting dressed, and even drinking water can pose challenges that require others’ help. Accepting help is part of my daughter Ella’s daily life, something she’s become accustomed to from…
Harsh Flu and a Wake-up Call: Let’s Go, Seize the Day!
Guess who spent the last several days in the hospital with the stomach flu! I think I mentioned in a previous column that I haven’t been sick in — well, years. Somehow, for some reason, I’ve managed to stay pretty healthy, so…
Protecting the Walls: Wheelchair Accessible Homes are Trial and Error
Around almost every corner of each wall on our first floor we have small corner protectors. This is to combat Ella clipping the corners as she cruises around the house. We purposely bought our current house because the doorways from room to room are wide…
Growing Pains Can Be a Real Headache with SMA
When I was a kid, I was skinny as a stick. Part of this was because I got sick so often, but the other reason was that I was a notoriously picky eater back then. I had many health issues at the time — but the…
Five Reasons You Should Know #CripTheVote, a Rising Political Force for the Disabled
#CripTheVote sprang up during the election campaign of 2016 to make sure disabled people vote and to try to influence public policy on disability. Founded by Alice Wong, Andrew Pulrang, and Gregg Beratan, it achieved considerable fanfare as the first organization aimed at making the disabled…
Daddy’s Bunny Suit Helps the Spinraza Go Down
Her lips quiver, but days before they sported a wide smile. She grabs for my hand in an attempt to gain comfort, but a day before she gave me high fives. The noises from her mouth are those of distress, but days before they were squeals of joy.
Post-College Career Finds the Bright Side of a Broken System
I’ve known for a long time that my post-college life would be a little unorthodox compared to that of my friends. While most people who graduate either enter the workforce or go to grad school, anyone with SMA (or an equally severe physical disability) knows that finding…
