31 Days of SMA

Children diagnosed with spinal muscular atrophy (SMA) are usually informed about the diagnosis by their parents, who frequently lack support and information about the disease, ultimately leading to poor communication that can be emotionally painful for everyone involved, according to a new study. “Poor communication has a double…

Photo courtesy of Shailynn Taylor Day 19 of 31 This is Shailynn Taylor’s story: Hi! I’m a 26-year-old entrepreneur, university graduate, public speaker, and model, and I live with SMA type 2. I remember what the lack of representation in all aspects of my life felt…

Photo courtesy of Madison Parrotta Day 18 of 31 This is Madison Parrotta’s story: From as early as I can recall, having SMA felt like being on the world’s largest Ferris wheel. There were ups and down, and plateaus in between, and being stuck in one…

Photo courtesy of Kyra Richardson Day 17 of 31 This is Kyra Richardson’s story: Growing up with a SMA, I was often in and out of the hospital. At age 7, I had spinal surgery because my back was curved like an S.

Carli Lynne Hamilton with her husband, Jared, and daughter, B. (Photo courtesy of Carli Lynne Hamilton) Day 16 of 31 This is Carli Lynne Hamilton’s story: I am Carli Hamilton. I was diagnosed with SMA when I was 2 years old. Like many other…

Zarek, left, and Zack Elizondo. (Photo courtesy of Zarek Elizondo) Day 15 of 31 This is Zarek Elizondo‘s (@sweetlifeofzackandzarek) story: Hi, my name is Zarek Elizondo. I’m 26 years old, and at 18 months, I was diagnosed with…

Céline and Amber-Joi. (Photo courtesy of Amber-Joi Watkins) Day 14 of 31 This is Amber Joi-Watkins’s story: My daughter, Céline, was diagnosed with SMA type 1 in December 2018, when she was 6 months old. My only focus at the time was…

Photo courtesy of Steve Bingman Day 13 of 31 This is Steve Bingman’s story: Society often tells us that those with disabilities have a predicted path of life. What society doesn’t tell you is that your disability can be used as an advantage in life.

From left, Steve, Brittany, Christian, and Azlyn Bingman. (Photo courtesy of Brittany Bingman) Day 8 of 31 This is Brittany Bingman’s story: As a little girl growing up, I had this perfect idea of whom I would marry and what kind of family I…

From left, Antoine and Janelle. (Photo courtesy of Janelle Fiesta) Day 7 of 31 This is Janelle Fiesta’s story: When I was in elementary school, I knew that I was physically different from my peers. Besides being the only student in…