Recently, I spoke with my friends Jim and Becky Berry on the SMA News Today Podcast. In late 2018, they lost their eldest son Carson, who was a college student with SMA type 2. Some of my faithful readers may recall…
The month of November kicked off eventfully in 1997 in the wee hours of the morning when our electricity went out. Jeffrey, our 5 ½-month-old baby with spinal muscular atrophy (SMA), relied on blow-by oxygen and an oxygenator for comfort, and the power outage rendered both useless.
The winds howled and the blustery snow started falling early in the day. It was an unusual sight for the last day of October — Halloween. The city was quickly covered in a blanket of wet snow. Driving became slow and methodical, motorists keeping their distance from the…
Wow, October feels like it was just yesterday. But it also felt like it took 45 years to end. What even is time? My book signing was on Oct. 2. I thought I should probably update you now that it’s November. Holy heck, it’s been a whole…
Recently, I attended the 2019 Cure SMA Chapter and Leadership Conference in Boston. There, I connected with friends I had met through previous conferences and listened to presentations from Cure SMA staff members, as well as updates from the pharmaceutical companies…
I have this nagging feeling that I’m going to die in bed. My parents sleep in the basement, so when I need to be rolled at night, I scream at the top of my lungs until someone hears me. We have a baby monitor that works…
It is truly the most wonderful time of the year. As you read these words, I hope that you are envisioning me spinning in my wheelchair, wearing an oversized cardigan with leaves falling all around me, and resting a pumpkin spice latte on my footplate. When it comes to autumn,…
There are three Casten kids: Ava (12), Henry (11), and Ella (9). They each need our attention, and will ask for it periodically. Our life is quite crazy. Lindsay is still recovering from the amputation of her lower right leg and is facing a complete…
I looked up the definition of “minority group” the other day, and it was defined as “a group that is different racially, politically, etc., from a larger group of which it is a part.” I was prompted to think about the term…
It’s my favorite time of year. I love the fresh autumn breeze that brushes past my face every time I go outside and the fact that it’s socially acceptable to run around in Freddy Krueger and Darth Vader masks. I’m…
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