Get regular updates to your inbox.
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…
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…
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…
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…
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…
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.
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…
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…
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…
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…
Get regular updates to your inbox.