Photo courtesy of Beth Whitby Day 11 of 31 This is Beth Whitby’s (@rolling_in_vintage) story: My name is Beth Whitby, I am 35 years old, and I have SMA type 2. I live in the U.K. with my husband and daughter. I have always believed and been taught…
31 Days of SMA
Photo courtesy of Carolyn Saylor Day 10 of 31 This is Carolyn Saylor’s story: We live in a rural area in central Wisconsin, and when our daughter was diagnosed with SMA type 2 in 1991, the local specialists felt we’d be “lucky” if Britt lived to…
Photo courtesy of Tandin Dorji Day 9 of 31 This is Tandin Dorji’s story: I moved to the United States as a teenager with hopes of getting my disability cured in 2007. Since I was misdiagnosed with polio back in my native country, Bhutan, I was sure that I…
Photo courtesy of Ali Ramos Day 8 of 31 This is Ali Ramos’ (@kittylegs) story: I started my career as a graphic designer, one who liked not having to interact with others unless it was about art. I felt intimidated to go back to school and dive into…
Photo courtesy of Samantha Przybylski Day 7 of 31 This is Scarlett Przybylski’s story: Hi, my name is Scarlett! I just turned 4. Next year I will turn 5! I had a Pokémon birthday, and Pikachu is my favorite! I have a mama and a papa. My papa’s name…
Photo courtesy of John Jones II Day 6 of 31 This is John Jones II’s story: I was diagnosed with SMA at a very young age, making it a part of my life since before my recollection. That is a blessing really, to not have to navigate life that…
Photo courtesy of Sarah Cheung Day 5 of 31 This is Sarah Cheung’s (@sarahpcheung) story: From a young age, I wanted to help others. I was crushed when I realized I could not become a nurse due to my physical limitations (I have SMA type 1). Given my…
Photo courtesy of Chaz Hayden Day 4 of 31 This is Chaz Hayden’s (@thechazhayden) story: Hey, friends! My name is Chaz, I’m 25 years old, and I have SMA type 1. I’m a soon-to-be-published author with my debut novel, The First Thing About You, releasing in fall…
Photo courtesy of Ainaa Farhanah Amali Day 3 of 31 This is Ainaa Farhanah Amali’s (@ainaafrhanah) story: “Sweet, sour, salty, mixed” — that’s how I describe Year 2 of the COVID-19 pandemic, which of course has not ended yet. Last year, when the first cases were announced, many…
Photo courtesy of Rachel Stewart Day 2 of 31 This is Rachel Stewart’s story: Growing up, I didn’t have any role models with my disability, let alone know someone with SMA who was married, or in a queer relationship. And I certainly didn’t see any representation on TV or…
Recent Posts
- Prostate cancer medicine may slow progression of SBMA: Real-world study
- Humor is my key to survival in life with SMA
- This Christmas, I’m thankful to have resolved some health complications
- No one knows what they’re doing and everyone is doing their best
- Itvisma approval ushers in era of therapeutic choice for SMA patients
