Author Archives: BNS Staff

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…

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…

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…

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…

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…

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,…

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…

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…

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…

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…