The quiet miracle of still living with SMA
Living with spinal muscular atrophy (SMA) means my body doesn’t always warn me before it spirals into crisis. One minute, I’m sleeping peacefully. The next, I jolt up, gasping for air. My…
Being Resilient — Jasmine Ramos
Jasmine Ramos is a junior at Millersville University of Pennsylvania. As a student involvement assistant at her community college, she’s managed the school newsletter, earning her the affectionate title of “newsletter queen.” Diagnosed with SMA type 1 at 6 months old, Jasmine hopes to connect with others through her column, sharing personal experiences with a rare disease. Between studying and crafting articles, she enjoys cozying up with a blanket while engrossed in psychological thrillers or true crime TV shows. Her journey reflects resilience and a commitment to raising awareness about lesser-known conditions.
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How I’m learning to live authentically as myself
For most of my life, I felt like I had to shrink parts of myself to fit into a world that wasn’t built with me in mind. Living with spinal muscular atrophy (SMA)…
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In my dream world, there are no barriers
When I close my eyes, I see the world as it should be — a place where accommodation isn’t something to fight for; where people with disabilities don’t have to plan every step, hoping…
I rely on caregiver support to maintain my independence
A few weeks ago, my mother injured her foot, temporarily limiting her mobility. As she struggled to get around, relying on others for assistance, she looked at me and said, “I never realized how…
Empathy is the heartbeat of human connections
Empathy is often described as the ability to imagine yourself in another’s shoes, see the world through their eyes, and feel the weight of their experiences as if they were yours. But empathy is…
The healing power of writing on my journey with SMA
Writing is a kind of magic — a spell woven with intention and purpose. It’s more than just a passion; it’s my superpower. I can bridge the gap between myself and the world through…
Finding purpose and joy through the gift of volunteering
Volunteering has given me more joy and meaning than I ever imagined possible. Living with spinal muscular atrophy (SMA) means I can’t move my own body, but that hasn’t stopped me from finding…
When the disabled needed a place to connect, I created one
As depression and anxiety started to affect my outlook on life, I noticed how these challenges clouded even the simplest moments. Depression’s weight often made it hard to see beyond a day’s struggles,…
Celebrating my 29th birthday in New York brought joy, nostalgia
Since I have spinal muscular atrophy (SMA), my birthday always demands a grand celebration. And this year was extraordinary. Not only am I closer to bidding farewell to my 20s, but I also…
Addressing 5 common misconceptions about disabilities
As those of us with spinal muscular atrophy (SMA) know all too well, people with disabilities often face a slew of assumptions and misconceptions. To improve awareness and understanding, I want to address…
How my technology use has shifted over the years
The digital age has transformed how we connect, empowering people like me to engage with the world from anywhere. My tech obsession ignited around age 14 with the thrill of my first…
Summer memories remind me of the power of community
As another hot summer gets underway, I’ve been reflecting on two pivotal events that took place a year ago this month. These memories elicit feelings of joy whenever I’m feeling down in life…
