Like most families broadsided with an unexpected, rare diagnosis, my husband and I had never heard of the one attached to Jeffrey, our third baby. Spinal muscular atrophy (SMA) was completely foreign to us, so it came as another shock to learn that SMA was the leading…
Ella turned 9 years old in June. We have noticed lately that she is gaining too much weight. We’ve had Ella on the amino acid (AA) diet since she was 20 months old. Over the years, we’ve made many adjustments to the diet in terms of ingredients, volumes,…
We see a lot of articles addressing SMA and dating, or dating when an individual is in a wheelchair. I’ve had little to no experience in dating. I had a boyfriend when I was in middle school, but that was more of a “Well, everyone…
“So, do you sleep in your wheelchair?” Believe it or not, I have been asked this question more than a few times. Granted, I don’t recall hearing it after I finished middle school; but even then, the fact that any kid thought this was the case…
As I write this column, only 11 days are left before my nonprofit organization hosts its 10th annual gala for spinal muscular atrophy. Eleven. And while 11 has always been my lucky number, as I glance at my to-do list I’m reminded there really isn’t anything lucky about it…
Ella had a fun-filled week. Her cousin and aunt came in from Virginia to spend some summer time with the Castens. Her other two cousins, who live in Chicago, also spent time with the family. Family outings can sometimes be a challenge. We have to make…
We’ve finally had some decent weather. It has been rainy lately, which I thoroughly enjoy because I’m allergic (literally, not figuratively) to the burning orb in the sky that is the sun — both my skin and eyes react. But construction doesn’t happen when it’s raining, which…
Of all the technologies that I use in my everyday life, the two most important ones are my wheelchair and my JACO robotic arm. My chair keeps me moving from one place to the next, and my robotic arm compensates for many of…
I was the kid with 50 different diaries. Usually pink with sparkles. Bonus points if they came with their own bejeweled pen, because what 9-year-old girl doesn’t like rhinestones? The issue is that I never used them. People would buy me diaries…
There’s a famous quote by Randy Pausch in his book “The Last Lecture“ that says, “We cannot change the cards we are dealt, just how we play the hand.” My heart holds so much truth in this quote because I often envision my life with SMA like building a…
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