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Carter Roberts’ motorized wheelchair didn’t arrive until the day he died. It had been a long time coming and his parents had fought hard to get it. The chair cost more than $32,000 and the insurance companies wouldn’t cover it, so the family went to court. One insurer eventually agreed to pay for some components of the chair but not the whole thing. And then none of it mattered anyway. On Sept. 22, 2018, the Roberts’ doorbell rang and the chair was delivered. Also on Sept. 22, 2018, Carter died, just three months shy of his sixth birthday. He had been largely paralyzed for the final two years of his life. The family is only now beginning to pick their way through the horror of what happened. “Our eight-year-old daughter believes she can speak to him,” says Carter’s mother Robin. “She was playing video games the other day and she’s looking up and going, ‘Carter are you seeing this? I need your help.’”
By any measure, the Roberts family of Richmond, Va. was spectacularly unlucky. They lost their son to a disease that science first recognized only in 2012. It’s new enough that it didn’t even have a formally accepted name until 2014. When it got one, it was one of those names that is more or less just a clinical description of what the disease is: acute flaccid myelitis (AFM), a sudden inflammation of spinal tissue resulting in flaccid paralysis of the muscles of the limbs, neck, face and often diaphragm. It’s a lot like polio but it’s not polio; it’s a little like meningitis and Guillain-Barré syndrome but it’s not them either. Indeed, no one knows exactly what it is. For the moment it remains rare: In the U.S., where AFM is closely tracked, the disease attacks fewer than one in a million people even in peak years, and it very rarely kills. But in the past seven years, it’s been striking more and killing more, and there is a tick-tock certainty to when it will hit next. As with polio, AFM is seasonal—though unlike polio, it arrives in late summer and early to mid fall, rather than in the spring and summer. Also unlike polio, it runs in an every-other-year cycle, peaking in even-numbered years.
While spotty outbreaks of AFM have been retrospectively diagnosed in the U.S. from 2005 to 2012, it was in 2014 that the disease established its current pattern. That year, there were 120 confirmed cases scattered around the country; in 2015, the total fell to 22 cases; it climbed again in 2016 to 149 cases; fell again in 2017 to 35 cases and jumped back up last year to 201 cases. So far in 2019, there have been 20 cases of AFM in nine states. Now, as an even-numbered year inevitably approaches, there is a growing feeling of looming menace. When 2020 arrives—and then 2022 and 2024 and on into the future—more and more children are destined to be claimed, unless science gets a handle on the disease fast. “This is our generation’s polio,” Carter’s mother, Robin Roberts says flatly.
That’s not just the opinion of a grieving mother; doctors admit to feeling daunted too. “I can’t think of a single disease that had this pattern that we’re seeing, with modern laboratory diagnostics not figuring it out,” says Dr. Nancy Messonnier, director of the CDC’s National Center for Immunization and Respiratory Diseases.....
