Photo courtesy of Tyler and Dara Bailey Day 30 of 31 This is Tyler and Dara Bailey’s story: My wife, Dara, has never viewed her life with SMA as being different than the lives of people without it. Growing up, she had goals of going to college, having…
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…
Photos courtesy of Keisha and Kea Molina Day 29 of 31 This is Keisha and Kea Molina’s (@kandkcountrysingersmusic) story: Hello, we are Keisha and Kea Molina. We are 27-year-old identical twin sisters from southern New Jersey. We were diagnosed with SMA type 2 at 10.5…
Photo courtesy of Jessica Keogh Day 28 of 31 This is Jessica Keogh‘s story: I’m Jessica Keogh, and I’m the oldest of three, but the only one who shows physical symptoms of spinal muscular atrophy with respiratory distress, or SMARD. Despite showing…
Photo courtesy of Maxwell McKnight Day 27 of 31 This is Maxwell McKnight’s (@maxwellmnight) story: Hello! My name is Maxwell. I’m 18 and have just finished my A levels. I have spinal muscular atrophy (SMA) type 2. This September, I begin my journey into higher education,…
From left, Corey, Kate, and John Weber. (Photo courtesy of the Weber Family) Day 26 of 31 This is John, Corey, and Kate Weber’s story: When my husband John and I learned our 4-month-old daughter, Kate, had SMA type 1, some of our first thoughts…
Photo courtesy of Ryan Manriquez Day 25 of 31 This is Ryan Manriquez’s (@ryanmanriquezz) story: Hi, everyone! My name is Ryan Manriquez, my pronouns are he/they, and I live with SMA type 2. I am 22 years old and a fifth-year transfer student at the University…
Photo courtesy of Maddy Gunawan Day 24 of 31 This is Maddy Gunawan‘s story: Hi! My name is Maddy, and I was diagnosed with SMA type 2 before my second birthday. Upon receiving a diagnosis, my parents faced a mountain of unknowns. They recently…
Photo courtesy of Stephen Mikita Day 23 of 31 This is Stephen Mikita’s (@stevemikita) story: In 1968, I was 12 years old and had severe scoliosis. My doctors told me that my spine resembled the letter S, and I underwent spinal fusion. To say that…
Logan Mundy and Arya Singh Day 22 of 31 This is Arya Singh and Logan Mundy’s story, as told by Logan: I was nervous for my first date with Arya. At the time, I had not even heard of spinal muscular atrophy (SMA) and knew nothing about disability or…
Photo courtesy of Jasmine West Day 21 of 31 This is Jasmine West’s story: Hello, I’m Jasmine, I’m 28 years old and live in England. I was diagnosed with SMA when I was 18 months old. I work full time in payroll, and I model in my spare…
