There are many disabilities out there that significantly affect people’s lives but are not immediately noticeable to the general public. That is not the case with spinal muscular atrophy (SMA). As an adult living with SMA type 2,…
I am an adult with SMA who lives independently, so when people learn that most of my caregiving happens through 20-plus volunteer friends, they tend to be a bit flabbergasted. “How?” is the common and predictable…
In my life with SMA, my favorite thing to talk and write about is my caregiver community. They are truly exceptional and amazing people who faithfully show up, step up when my needs change, and…
I was diagnosed with spinal muscular atrophy (SMA) in the mid-1980s at 18 months old. At the time, doctors explained to my parents that, because it is a genetic disease, there was a chance that they would…
A sick feeling sank like a rock in my stomach. My wheelchair would not fit in the airplane cargo hold, the airline employee told me. My only options were to refund our tickets or reroute us through…
I’m getting ready for a trip to see my dear friend Christi get married this month. It’ll be the first time I meet her soon-to-be-husband in person, and from what she’s shared about him, I am so excited for…
It is always an interesting and fun challenge to navigate my limits and needs while living on my own with SMA. I have a wonderful community of friends and caregivers who come to…
As someone living with SMA, I’m really thankful for the creative products that have been designed and invented to make mobility easier for me. Some of these are add-ons to my wheelchair that we’ve purchased,…
How can I possibly show the deep appreciation that I have for the caregivers in my life with spinal muscular atrophy (SMA)? This is a question that burdens me often when I feel…
I love to volunteer. If I see a need that I can meet, I am eager to jump in. And if someone asks me to help with a project or service, I am quick to say…
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