Alexander Johnson

Alexander Johnson

 

 

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.

Continue reading “Alexander Johnson”