One week in August of 2016, 6-year-old Brandon Noblitt had what his family thought was a cold, along with a headache and neck pain.
But within days of his first sniffle, Brandon collapsed while getting out of bed. His dad, Brian Noblitt, tells PEOPLE that he and his wife were shocked to learn from doctors that their athletic and seemingly healthy son had the rare polio-like disease acute flaccid myelitis, also known as AFM.
An enterovirus had attacked Brandon’s spinal cord, said Noblitt, resulting in the diagnosis.
“It was tough,” Noblitt tells PEOPLE. “It was one of those moments that you as a parent never want to be dealing with.”
Brandon’s right arm and right leg were paralyzed and he needed a wheelchair to get around. With no known cure, Noblitt didn’t know if his son would ever walk again.
“All your friends are running around and playing, it’s just hard to sit in the bed and do nothing the whole time,” Brandon told CBS This Morning.
Following a nerve transplant in Philadelphia to restore movement in Brandon’s arm, the Noblitts discovered Dr. Amy Moore, a surgeon at Washington University in St. Louis, the only doctor in the US to perform nerve transfers on children’s lower extremities with AFM.
“My goal with the children with AFM was to restore hip stability, and then motion of the upper legs,” she told CBS.
During a first-of-its-kind procedure in August of 2017 on Brandon’s leg at St. Louis Children’s Hospital, “I was able to remove a nerve that wiggles the toes to the hips,” Moore told the network.
In just a few months after surgery, Brandon began flexing his leg. Then he started with a few steps. With plenty of physical therapy, he is now walking with the help of a brace. The only time he uses the wheelchair is to play basketball.
“It’s been amazing,” Brandon, now 8, told CBS. “Thanks to Dr. Moore, I can go outside, play with my brothers, play football.”
As Moore told CBS: “My intention is to give these families hope that there are options if they get this horrible diagnosis.”
Noblitt is extraordinarily grateful for Moore’s expertise — as well as her bedside manner.
“She is so kind, she cares about Brandon, she cares about my wife and I,” he tells PEOPLE. “She explains things, she addresses our concerns.”
Less than one in a million people in the U.S. get AFM each year, according to the Centers For Disease Control and Prevention. It can cause sudden weakness, paralysis and respiratory failure.
While the symptoms are polio-like, those with AFM have tested negative for the disease.
Doctors say that there’s compelling evidence that a virus called enterovirus D68, or EV-D68 is the main cause of AFM.
But the CDC does not believe that they can definitively say EV-D68 is the source of AFM and that the cause of most cases remains unknown, according to the CDC.
Another mystery baffling health experts is the high number of AFM cases this year, with 90 confirmed cases in 27 states, and most victims are children, as of November 13, reports the CDC, which is investigating a total of 252 cases.
“It’s something that’s very scary for people because it’s a polio-like illness and it can show up in otherwise healthy children,” Dr. Aaron Michael Milstone, the Associate Professor Pediatrics at John Hopkins University School of Medicine, has told PEOPLE.
While it’s not known if Brandon will make a full recovery, his family is hopeful.
“I’ve asked all the doctors numerous time and they can’t tell us, it’s so new,” says Noblitt. “The way we’ve chosen to look at it, we are trying and working toward a full recovery, but we are thankful for anything.”
— With reporting by Julie Mazziotta