Bathing suits, sunscreen, towels, and water. The key ingredients for some summertime fun. Almost all kids love the water and Ella’s no different. We all know the feeling of floating, yet for Ella it represents a sense of freedom — freedom from the constraints…
Last week I wrote about the different perspectives within the SMA community toward Spinraza treatment, with a brief summary of where I stood on the issue. As it turns out, the day after that column, my family and I found out that Medicaid had approved…
I went to therapy this week for the first time in, get this — 14 months. I talked about loneliness; a familiar creature, at least to me. I’ve always felt its dark shadow, heavy and suffocating — even as a seventh-grader, during what…
I don’t know about you, but this time of the year always has me daydreaming of some sort of tropical getaway complete with life-changing excursions and the ability to immerse oneself in new cultures and traditions. At heart, I’m consumed by wanderlust. I love seeking new adventures and exploring all…
Children engage in all kinds of play throughout the day, from quiet play to rambunctious play. Ella is no different, although her terms of engagement can sometimes be different from your typically developing child. When she goes to the park, she races…
December 23, 2016 was a big day for my family and me. Not only did my sister go into labor with she and her husband’s first child on this day, but it also was the day it was announced that the first FDA-approved treatment for spinal muscular…
I’ve been trying to resist my depression ever since I wrote my column on disability, mental illness, and my inability to pretend that everything in my life is OK. When I say resist, though, I don’t mean that I’m ignoring it…
Let’s imagine you and I are enjoying a delicious cup of coffee right now. Around us are people engrossed in their laptops, slugging down every ounce of caffeine, just to survive the workday. Old friends, new friends, and best friends sit and mingle on their lunch breaks or while their…
Children grow. They grow older. They lengthen. They gain weight. The same is true for kids with SMA. Because they are wheelchair-bound, their caregivers spend much of the day lifting them in and out of their wheelchairs. Lifting them for various reasons can be…
As I’m writing this, I’m not working on a laptop, but on my iPhone. To my left is my robotic arm, mounted on the side of my wheelchair, which I’ll use later tonight to eat dinner. Over in the corner sits my chest PT equipment, which I use…
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