Posted: February 18, 2016 at 8:08 pm

By Samantha Clarkson, Kalea Gunderson and Nate Temple

MORGANTOWN – It wasn’t long after the birth of Alexander Johnson that his parents, Autum and Chris Johnson could tell something was different about him.

Alexander was diagnosed at 2 weeks old with Spinal Muscular Atrophy, an inherited neuromuscular disease characterized by the loss of motor neurons in the spinal cord, causing his brain to stop sending signals to the body’s muscles and turning him “floppy,” according to West Virginia University neurologist Dr. Muhammad Khan.

With daily treatment and intensive care, Alexander has been able to live for a year and a half. However, there is currently no cure for SMA, leaving the Johnsons desperate for a miracle as they’re told he has a 5 percent chance of living past his second birthday.

The Johnsons have remained optimistic despite the grim prognosis. To hear their story of struggle and hope, view the video below.

Alexander has a nurse at his bedside  24 hours a day in order to receive the treatment and medicine he needs.

Whitney Brooks, the registered nurse who has taken care of Alexander since his diagnosis, has had her share of scary moments. Below, Brooks describes one of her biggest scares while Alexander’s life was in her hands.

“I thought he was gone,” she said.

There are SMA support communities for families like the Johnsons. These groups offer advice, financial help and a safe haven for those going through the struggles that come with this disease.

To help these families fight to find a cure, join the SMA Support Group on Facebook or donate to organizations like, or any individual family’s fund.

Alexander’s online fund can be found at