AFM isn’t new, but it rose to prominence (and gained its name) in 2014 when it afflicted 120 people in the United States—a record number. Doctors wondered whether that was a freak occurrence, but the condition came back in 2016, affecting 149 additional patients. And this year, it returned again, with 158 confirmed cases and more under investigation. The disease now seems to run on a biennial schedule, and although the third wave peaked in mid-fall, scientists, clinicians, and parents are anxiously looking ahead to a likely fourth surge in 2020.

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Unlike many seasonal illnesses, which come, sicken, and leave without long-term consequences, AFM means lasting (if not lifelong) disability for those it touches. And that community grows with every new wave: A Facebook group for parents of children with AFM, which formed in January 2015, has swelled to more than 600 members.

“We dread late summer,” wrote Bove in a recent opinion piece, co-authored with two other parents of children with AFM. “We grieve those final days when our still-normal children climbed their last playground structures or took their last runs down the block or their last independent breaths. We relive the trauma of the hospitalization, when at night we kissed our brave children, not knowing whether they would awaken stable, intubated, or unable to ever walk again. In addition, we fear the coming wave of new bewildered parents.”

But Bove says that something was different this year. In 2014 and 2016, the affected families were still getting to grips with this strange and unfamiliar condition. “This year, when we saw many new parents join the Facebook group, it was like: Not this time!” she says. “It really galvanized the parent community to become more outspoken in their advocacy. They’ve plastered the news with stories.” In no small part because of their efforts, awareness of AFM has soared, including within the medical community. “We’re seeing a very appropriate amount of increased attention,” says Kevin Messacar, a pediatrician at Children’s Hospital Colorado.

That matters because AFM is still rare, and often misdiagnosed. Despite how dramatic the later symptoms can be, they still might be easily mistaken for other paralytic illnesses. When I spoke to Priya Duggal from the Johns Hopkins Bloomberg School of Public Health earlier this week, she had just heard from a family whose child might have been misdiagnosed with the autoimmune disorder Guillain-Barré syndrome. “They live in a rural area in a state that doesn’t see a lot of AFM cases,” she says. “They’d seen multiple neurologists, and no one had even suggested it. It was only because of a press story that they now think that their kid has AFM.”

Meanwhile, the earlier signs of AFM can be so innocuous that they’ve often been dismissed—as they were with Luca. “A lot of parents were told all kinds of things,” Bove says. “That it’s [in their children’s heads], or that it’s because of their fever, or even that a dad had broken the kid’s arm!” Bove and her co-authors write in their op-ed that clinicians aren’t even checking to see whether children can raise all their limbs, let alone performing more complex medical scans.