Parents learn to manage the effects of a mysterious disease that weakens children's muscles

A rare disease resembling polio strikes children in several states and there are now 38 confirmed cases of acute flaccid myelitis, or AFM.

The Centers for Disease Control are investigating the peak of this mysterious disease, which made headlines in 2014.

Lucian Olivera, seven, was one of those children diagnosed four years ago and he has come a long way since. At the time, doctors did not really have a name, but now they believe that it is an acute flaccid myelitis.

Lucian can not stand without a corset or walker, but that does not stop him from standing on his hand.

"I am very flexible," he says proudly.

It was one of the first documented cases. And since then, Lucian's mother says she has seen more and more children diagnosed each year.

"It breaks my heart every time," said Erin Olivera. "You relive it every time."

New cases tend to occur in clusters. The CDC keeps track. But Erin Olivera's accounting exceeds the government's account. She also runs an online support group called AFM Awareness.

"The Facebook group gives me some peace knowing that I can help others find a way to cope and continue their lives," she said.

The AFM hits a person in a million from early childhood to early adulthood. Doctors think that an enterovirus is causing the pseudo-polio syndrome, although not all patients have been tested positive for the same virus.

Dr. Sharon Taylor of Adventist Health, Lucian's pediatrician, said the symptoms are showing up quickly.

"They start with an illness resembling the flu, and they have a progressive weakness of any of the four limbs – up to four members may be involved," she said.

Until doctors clearly understand the causes of the AFM, there is no treatment except for the management of each of the patient's symptoms.

"If they're having trouble breathing, they're broken down," Taylor said. "If they have trouble moving, we do physical therapy, we prepare."

It took Erin more than two years and many doctors to get the support Lucian needed. She and other parents argue for more coordination in service delivery.

"As parents, we are now trying to ban together to get a very broad and strong voice," she said.

When Lucian was diagnosed, the doctors proposed a bleak prognosis. But Erin said other families could not lose heart.

"When you are told that you will never see movement and that you will see a shoulder move, it changes a life and there is still hope," she said. "And it's my greatest thing to do – not to lose hope."