What You Need to Know: Acute Flaccid Myelitis

Acute flaccid myelitis: Mom traveling to D.C. to fight polio-like illness

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A mother from Washington state says there's more to be done to fight AFM, which causes debilitating paralysis in children.

She is leading a group of moms to get Congress involved.

"The CDC gave it a name in 2014," said Heather Werdal of Bremerton.

"AFM stands for acute flaccid myelitis," she said.

>> What's causing polio-like illness that's paralyzing children? Health experts just don't know

The polio-like illness is now back in the news. The Centers for Disease Control and Prevention confirmed that nearly 80 people in 24 states have been diagnosed with AFM this year.

Many of those stricken are young children, like Heather's son, Hayden, was in 2014.

"He was 13 years old," she said. "He was a perfectly healthy eighth-grader. He got a cold."

She said even doctors aren't sure what caused him to get so sick.

"The doctors that are working on this in Colorado, Nebraska, they have come across two entero-types of viruses that they suspect that several children have tested positive for," she said.

>> Acute flaccid myelitis: 155 cases of polio-like illness under investigation, CDC says

What they found are different forms of the entero virus which typically cause a minor illness but rarely turn catastrophic.

"What's unique about our kids?" she asked. "Why our kids? Why? We believe that small number is higher than what they're saying, but we still recognize it's rare. It's just that it may be one-in-a-million. But he's my 100 percent."

And not even the CDC can provide answers.

"Our biggest problem is there's no mandatory reporting to the CDC," Werdal said. "I know there's more cases just based on the number of parents that are joining our board. Their state health departments are diagnosing them with AFM but they're not necessarily submitting those cases to the CDC. It costs money to do that."

>> Georgia toddler paralyzed overnight as acute flaccid myelitis fears grow nationwide

At the center of all of this is her son and the remarkable way he sees his predicament.

"As a minor setback in my journey through life," he said. 

He says he hasn't asked, "Why me?"

"We've never had that mindset of, 'Why me?'" Hayden said. "It was always, 'This sucks; what can do we do to work on it?'"

The work his mother is now planning to do will need to happen in the other Washington. She and several other AFM mothers plan to travel there to talk to Sen. Patty Murray and other members of Congress to convince them to act.

"CDC doesn't have the power to demand to make it mandatory for every state to report cases of acute flaccid myelitis or even suspected cases," Werdal said.

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She believes had the CDC been tracking AFM, her son might have gotten treatment sooner. And the paralysis might have been stopped before it rendered him a quadriplegic.

As it is, the future is looking brighter for Hayden. He is regaining movement in his limbs. And he's in college now, hoping to one day be a computer scientist.

"He's my all," she said. "And I have to fight for him. And I have to fight for the other kids that are going to be diagnosed in the future."

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