Obtaining the right equipment for a child with a disability can be expensive. Yes, some insurance companies cover a lot of base medical needs, but many necessary modifications are not covered by those companies. Thankfully, the University of Illinois at Chicago has a program called the…
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I turn 25 in a few days, which for me is a pretty substantial accomplishment. After four broken legs, two major surgeries, multiple run-ins with pneumonia, a couple of pills shoved up my butt, and far too many catheters, I’ve managed to carry on. I figure…
I’ve quoted my favorite poet, Ada Limón, several times throughout the history of this column. Her poems “The Leash” and “Instructions on Not Giving Up” have been key…
I had a friend in college who was very much a free spirit. He always went with the flow, never sweated the hard stuff, and was the kind of person who was always up for an adventure. To kill time and unwind together, we used to hop in…
In the past two years, I’ve held seemingly every possible position on Spinraza (nusinersen). I went from elation in knowing that a treatment for SMA existed to being so fed up with the process that I never wanted to hear the word Spinraza again. The current situation is…
Ella takes great joy in slime. It’s the new craze these days. We sit at the kitchen table and pour glue into a bowl. We add other ingredients and before you know it we’ve made a squishy slimeball. She watches YouTube videos to get new ideas…
At the time of writing this, it’s been one week since the company I work for lost one of its true titans. On Sept. 26, our senior managing columns editor, Serena Lawrence, passed away. Beyond being one of the best editors I’ve ever had the pleasure…
“For the most part, my solutions to human problems have been simple ones—get more rest, do good work, take things a day at a time, and find some people to love.” –Mary Pipher, “Letters to a Young Therapist” It’s getting to be…
Can I be totally real with you for a second? Putting yourself out there into the world is no easy task. Being honest, sharing your truth, and inviting cyberspace into your own little, unique world is an incredibly vulnerable feeling. What will people think? Are you sharing too…
Kids with SMA have brittle bones, and Ella has had her share of breaking them. Just the other day she was sitting in her power wheelchair next to the coffee table. She was playing a game on her iPad. Her power wheelchair was “on,” and her…
