Photo courtesy of Ross Hovey Day 20 of 31 This is Ross Hovey’s (@thesmartchap_rosshovey) story: Having just turned 43, I’m reflecting on my achievements in life and the regrets I have, which I am fortunate to say are few and far between. While everyone’s lives are different,…
31 Days of SMA
Every day in August, we will feature a story from someone in the spinal muscular atrophy community to mark SMA Awareness Month. At the end of the month, our goal is to have a collection of stories that represent different perspectives on life with SMA that help to inspire and empower our readers. Follow along with the series here or visit us on Facebook and Instagram, using the hashtag #31DaysofSMA.
From left, Kevin, Bryce, Drew, Judy, and Delaney Soule. (Photo courtesy of the Soule family) Day 31 of 31 This is Drew Soule’s story: Living with SMA is not for the faint of heart, but someone has to do it! People ask me all the time how I became…
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 like as…
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 place for…
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. I had breathing problems…
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 parents who receive the diagnosis…
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 spinal muscular atrophy (SMA)…
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 to get her treated…
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. I call this concept my…
Photo courtesy of Ben Lou Day 12 of 31 This is Ben Lou‘s story: Hi, I’m Ben, a mathematician, physicist, and philosopher studying at MIT. I also have SMA type 2. You’ll find me in the mornings pondering my problems in bed. I’ll be reading…
Kristen and her son Jack. (Photo courtesy of Kristen Resendez) Day 11 of 31 This is Kristen Resendez’s story: As a mom, my favorite time of the year is the Cure SMA Annual Conference. It’s the only time of the year when I know my son can be…
