Morgantown, WV– In 2014, Autum Johnson delivered a healthy, happy baby boy she named Alexander. As he developed, Alexander started to lose the ability to move. At five weeks old, Alexander was diagnosed with spinal muscular atrophy type 1 (SMA-1), a rare genetic disorder that is related to ALS (commonly known as Lou Gehrig’s Disease). As these children progressively lose movement, they become locked in their bodies. Babies with SMA-1 are not able to sit up, swallow, or breathe without assistance and require specialized 24-hour care. Alexander’s movement is currently limited to his eyebrows, jaw, and index fingers.
“I’m completely open about everything that is going on with Alex. I hope that another mother finds the information and doesn’t have to make the mistakes we made early in the process just because the information wasn’t out there,” Autum explains.