At first, LaMay Axton thought her 2-year-old granddaughter’s cough was simply a cold. Cambria Tate had been fighting a virus for almost three weeks, with all the typical symptoms: fever, exhaustion and chest congestion. But then something truly alarming started happening to the normally rambunctious toddler. Her limbs stopped functioning.
“As she turned the corner to head into the kitchen, her little legs fell from under her,” Axton said. “It was like watching a marionette doll.”
Looking back on those first warning signs that sent Cambria to the emergency room near their home in Inland Empire, California, Axton now realizes the cough was a harbinger of the virus’ severity: Her granddaughter’s diaphragm was paralyzing.
At the hospital, Cambria was diagnosed with acute flaccid myelitis (AFM), a rare neurological disorder that flares up mostly in young children every two years. Now 6 years old, she is a quadriplegic.
AFM, which is thought to be triggered by some enterovirus strains, resembles polio in how it attacks the nervous system, weakening muscles, and reflexes. It first surfaced in 2014, and then returned in 2016 and 2018, racking up some 600 cases in those cycles.
There have been more than a dozen cases diagnosed so far in 2020—and the U.S. Centers for Disease Control is anticipating more, this time against the backdrop of the coronavirus crisis.
“AFM is a priority for CDC as we prepare for a possible outbreak this year,” CDC Director Robert Redfield said in a briefing for reporters Tuesday.
“The virus causing this condition, enterovirus D68, tends to come in two-year cycles. This means it will be circulating at the same time as flu and other infectious diseases including COVID-19 and could be another outbreak for clinicians, parents and children to deal with.”
The CDC is urging that parents and doctors be vigilant for early signs of AFM, especially since its symptoms overlap with those of COVID-19, which is generally less severe in children. Limb weakness, in particular, is a red flag for AFM.
“The situation is the parent may notice a child may complain their arm or leg is a little weak and rather than sort of observe how that evolves over the next day or two… you just hope it goes away,” said Thomas Clark, epidemiology lead for the CDC's Meningitis and Vaccine Preventable Diseases Branch. “What we really want is parents to recognize that there could be a significant early sign and we want them to have the security to go seek medical attention at that point in time.”
There could actually be fewer AFM cases this year than in past years, or the outbreak may be delayed, because of the social-distancing and hygiene measures that have been adopted during the coronavirus pandemic. Officials stressed that if a child has AFM symptoms, parents should not let fear of COVID-19 stop them from going to the doctor or hospital.
Pre-clinical trials are currently underway at the National Institute of Allergy and Infectious Diseases—overseen by Dr. Anthony Fauci—on a possible vaccine for the EV-D68 virus strain that appears to be a primary culprit in AFM.
AFM remains a largely unexplained disease. A common feature is respiratory failure. Presenting itself in fewer than one in a million people, there is no set treatment plan and no cure. It’s not on the CDC’s list of Nationally Notifiable Diseases due to its small infection rate. But an overwhelming number of those inflicted with the disorder are children—more than 90 percent—setting victims up with potentially life-long paralysis. In the 2018 cluster of AFM patients, the average age was 5 years old, according to officials.
AFM cases in the U.S. are on the rise, increasing every two years with most occurring between August and November. So far this year, there have been 16 confirmed cases across 10 states and Washington, D.C., with the first arising in a child from Michigan. There’s been one death. In 2018 there were 238 total confirmed cases in 42 states.
The fact that this year’s spike coincides with the COVID-19 crisis causes concern for Axton. She had hoped a silver lining of this year’s AFM outbreak would be heightened awareness of the disorder. Now she fears the pandemic will overshadow it.
“There’s always something that outshines AFM,” Axton said. “We need a cure.”
Her granddaughter entered kindergarten at a public school this year. Cambria can now walk with her brace, but it still comes with challenges. Due to her condition, she can’t cough on her own. Cambria got a cold eight times just in the winter semester of her first school year. Then the pandemic struck, and classes shut back down.
“It’s been tumultuous, but it’s not a new normal for us. We’re used to taking precautions,” Axton said of the pandemic.
For now Axton keeps checking new requests to join her Facebook group for AFM parents, which spikes every two years along with the disease. She said it’s important they know they aren’t alone and that she’ll keep fighting to get awareness.
“I would like them to know that although AFM can be a very grim diagnosis, that there is a community and that you are not alone,” she said. “Being that it affects one or two in a million. I mean, we didn't think we would be one or two in a million. And here we are.”