I was maybe 4 or 5 years old the first time I saw the original “Star Wars” trilogy. It was a VHS set, and I still remember the old-fashioned covers that featured characters like Yoda and Darth Vader. For those of you ultra-millennials out there, VHS tapes are…
This morning, I woke up to a most unusual greeting from my mother. “Good morning. I want you to stay out of Massachusetts,” she said while removing the BiPAP from my nose. Typically, she knows not to speak to me when I first wake up in the morning.
At 10 months old, I was diagnosed with spinal muscular atrophy (SMA) type II, a recessive genetic neuromuscular disease. It increasingly robs me of strength and affects my spinal cord’s motor nerve cells. As the number one genetic cause of infant death, and with an average life expectancy of about…
Spreading awareness about SMA has been one of our goals since we first were given Ella’s diagnosis in 2011. We immediately started a blog for our friends and family, so that important updates could be disseminated in one place rather than having to repeat…
As Christmas lurks around the corner and everyone is hustling and bustling for last-minute gift deals, I’m reminded that this time of year requires extra preparation for myself as well. The holidays are great, but it’s the weather that accompanies this season that I have to handle with…
As Ella Fitzgerald and Louis Armstrong softly sing Christmas classics in the background, I ask my mother to set me up on my iPhone so I can gear up to write another column for you this week. There’s something both terrifying and wonderful about a blank page before…
Ella again had a Spinraza (nusinersen) injection last week. As per the regular routine, she had a physical therapy (PT) assessment using the Hammersmith Motor Function Test. The last time she did this test, she improved her score by four points, which…
At the time of this writing, I’m halfway through my Spinraza (nusinersen) loading doses. As I mentioned in a previous column, I’m receiving mine through the neck instead of doing the standard spinal tap injections. It’s certainly not for everyone, but it’s worked great for me.
I’ve always had a weird relationship with my body, and I’ve always struggled to put that relationship into words. I don’t struggle with self-image; my reflection isn’t distorted. Most times, I just wake with an impossible disgust. It’s not that I hate my body,…
Free time is a beautiful and wonderful thing to have in a day. It allows time for the activities we love most, breaks up our days so we’re not wearing ourselves thin, and gives a moment to rest and re-energize. It also is a rarity in my life…
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