'It wasn't his fault;' Local boy lives with rare, polio-like illness

ROANOKE, Va. (WSET) -- Imagine your child is healthy one day and paralyzed the next. That's what a mysterious, polio-like disease is doing to children throughout the country and here in central Virginia.

The chances of getting Acute Flaccid Myelitis, or AFM, are about one in a million.

In August, four-year-old Camdyn Carr was like any other four year old, until he wasn't. Camdyn was that one in a million to contract Acute Flaccid Myelitis or AFM.

The Carr household is filled with things that weren't there before. A breathing machine, a hospital bed, a small wheelchair - their new normal.

"They told us he was going to be paralyzed for the rest of his life. There was nothing we could do to help him," Brittany Hoff, Camdyn Carr's mother said.

It all started with what his parents thought was a simple sinus infection.

"He just had a really high fever and he wasn't feeling good," Hoff said.

His parents took him to their doctor who gave him medicine for a sinus infection and sent them home.

Two weeks later, parents - Brittany Hoff and Chris Carr say half of Camdyn's face started to droop.

"I knew something was wrong," Chris Carr, Camdyn's father said.

And within 24 hours

"He looked at me and said dad I can't scratch my nose," Carr said.

Camdyn became almost completely paralyzed and lost the ability to speak and breathe on his own.

Like polio, AFM attacks the nervous system, leading to symptoms from facial drooping or weakness in the limbs to full paralysis.

AFM is believed to be caused by an infection, possibly viral, that attacks and damages the spinal cord.

Doctors and scientists haven't found a cure and don't know the exact cause.

"And they were like yeah we can't do nothin' for you and that started our journey away from home," Carr said.

Since August the Carr family has been to multiple hospitals.

Starting at Carilion Roanoke Memorial Hospital, then UVA's medical center before spending months at the Kennedy Krieger Institute in Baltimore, where Camdyn went through intense physical therapy daily.

Doctors say that therapy could help him recover.

His mother constantly reminding him

"It wasn't his fault, he just got sick and he just has to get better," Hoff said.

Camdyn is finally home, but he can't play with his little sister like he used to.

He can't breathe on his own – doctors think his diaphragm may be paralyzed as well.

"He'll tell you 'I don't like my trach, I want my trach out,'" Hoff said.

Camdyn's fed through a feeding tube. He can only move his left hand and his right leg.

Doctors told the Carrs he could stay like this forever.

Camdyn has a home-nurse and goes through physical therapy daily.

For now, that's the only thing doctors say could help, as they don't know how to cure this disease.

"Because we don't know what causes this illness, it can be harder to treat this illness," Dr. Marshall Vogt, and epidemiologist with the Virginia Department of Health's Division of Immunization.

Vogt says the Virginia Department of Health is working to educate doctors on AFM, so they can recognize symptoms and report them.

"So that we can work to gather medical information and send that to CDC as part of their case investigation," Vogt said. "Because the CDC wants to get as much data as they can about this to learn more about the disease to find better ways to diagnose it, better ways to catch it early, and effective treatments for it."

Vogt said a majority of those diagnosed with AFM are about Camdyn's age... 4 to 6 years old.

According to the CDC, More than 90 percent of children had a respiratory illness or fever before developing AFM

"We think there could be a link between enterovirus and acute flaccid myelitis but we don't know for sure," Vogt said.

Vogt said they see a spike in cases every other year.

- In 2016 - the CDC confirmed 149 cases nationwide - 3 in Virginia.

- In 2017 - the country saw a drastic drop to 35 cases - none in Virginia.

- But in 2018 - that number skyrockets again to 201 confirmed cases -- 7 in Virginia.

Dr. Thomas Clark, the Deputy Director of Viral diseases at the CDC says while those patterns are clues, there isn't one thing that all AFM patients have in common.

AFM is believed to be caused by an infection, possibly viral, that attacks the spinal cord and damages it.

"Unfortunately there is no kind of a-ha moment. We think these viruses are implicated, but these viruses cause colds just commonly. Most kids who get them don't get AFM and we don't know why that really small number do get AFM," Clark said.

In November, the CDC created a task force of experts in response to the high number of AFM cases.

"The rarity of the disease makes it complicated to identify all of the cases and study them in a systematic way," Clark said. "It makes it really difficult to do the gold-standard for evaluating treatments - the randomized-clinical trial, and there just aren't enough cases."

Clark said the creation of this task force was also in response to many families, like the Carr's, speaking out and asking for more research.

"Some of their attention has really caused us to redouble our efforts," Clark said. "We've been working on this, but we can work harder. There's more to be done."

While the Department of Health gathers data and the CDC continues to research, the Carr family waits.

"He's a typical four-year-old that wants to run around and play and he can't," Hoff said.

"I expect and hope for a full recovery. Is that gonna happen? I'm not sure. Nobody's certain," Carr said.

But Camdyn isn't letting that stop him. He's mastered Mario-Kart, playing with his toes.

"That is the strongest person that I've ever met in my life. my son has showed me strength," Carr said.

Camdyn's parents say they are considering experimental treatments such as nerve transplants or something for his diaphragm that would work like a pacemaker.

His parents say they hope he’ll be able to breathe on his own soon and eat solid foods. Camdyn says he really misses chicken tenders and French fries.

A friend is holding a fundraiser on April 27th to raise money for a wheelchair accessible van. This would be used to take Camdyn to his doctors appointments - he can sometimes have about five in one week.

You can follow Camdyn's story by friending the Facebook page Camdyn's Fight or their fundraising page.