Angie Andersen of Albany is grateful acute flaccid myelitis is getting attention lately. But she wonders where that attention was four years ago when the disease was paralyzing her daughter McKenzie.
The mysterious polio-like condition affects the nervous system, particularly through the spinal cord, where it causes sudden weakening or paralysis of the body's muscles and reflexes. It seems to hit young children the hardest — and it appears to be on the upswing.
Acute flaccid myelitis is rare, thought to affect fewer than 1 in a million people each year, according to the federal Centers for Disease Control and Prevention. The organization's website states the condition isn't new, but what's different is the so-far-unexplained spike in cases in the past four years, most involving children ages 4 to 7.
According to the CDC, confirmed cases of AFM skyrocketed in 2014, hitting 120 people in 34 states between August and December — including McKenzie Andersen, now 10.
The count then dwindled to 22 cases the following year, then shot back up to 149 in 2016, then fell again, to 33. So far this year, the confirmed count is at 72 of 191 suspected, with dozens of potential cases still under investigation.
Why the every-two-year jump? The CDC doesn't know. What causes AFM? That's not known yet, either, although the 2014 outbreak coincided with reports of severe respiratory illnesses caused by a form of enterovirus, which some researches suspect may play a role.
How is AFM treated? No specific treatment exists yet, the CDC reports. Nor does the CDC yet have a handle on who's most at risk to get it, or what to expect, long term, for anyone afflicted by the condition.
All of the unknowns weigh heavily on Andersen, who has become an educator and advocate for children battling AFM since McKenzie, then 6, contracted what she thought at first was just a case of the Christmastime sniffles.
"They say, 'We only have 362 cases.' What if one of your children was one of the 362?" Angie said (the most recent CDC reporting confirms 396 cases). "Somebody needs to do something."
She's gratified to know the CDC is investigating the condition, but is skeptical of its insistence it is working with health care providers and state and local health departments to promote awareness. In her experience, the parents are the ones doing the promoting.
"It's been four years. What have you been doing for four years?" she said. "It would only take one child in Hollywood or in the government ... for it to get known. They would pour millions and millions of dollars into research."
Then a first-grader at Albany Christian School, McKenzie came home on her first day of winter break with the beginnings of a cold. Her mother and brother had the same thing and figured they'd simply ride it out together.
But while the rest of the family improved, McKenzie got worse. By Christmas Eve she'd developed pneumonia, but doctors who saw her didn't think it was anything more. By Dec. 27 the pain in her neck was was so severe she was rigid and screaming, Angie said, but doctors ruled out meningitis and prescribed painkillers and ice packs.
Back home, McKenzie began throwing up and her fever increased. When her mother tried to lift her, she lost control of her legs. Frantic, the family headed for the emergency room. "I didn't know if we would make it to the hospital," Angie recalled.
Albany's ER sent McKenzie home, Angie said, but the family was still very worried and called McKenzie's pediatrician, who recommended they go to the emergency room in Corvallis.
While there, Angie remembers someone offering McKenzie a Popsicle. She could clasp the wooden stick in her right arm but couldn't move it to her mouth. That's when both she and her mother really began to panic, Angie said.
Hospital medics transferred McKenzie to Randall Children's Hospital in Portland, but within a day of arriving, she had lost all movement in every part of her body except her left arm and her toes.
McKenzie had enterovirus, the family learned, and it had led to AFM, causing swelling in her brain and spinal cord. A ventilation machine would have to breathe for her.
Would she live? Nobody knew. Would she recover? Nobody knew that, either.
Four years later, the family continues to learn.
For one thing, they've found near-complete paralysis comes with unexpected complications, such as bones that become brittle.
Lack of muscle control also often leads to spinal contortion, which can cramp organs. In McKenzie's case, it grew so severe she could no longer sit in her wheelchair. She underwent back surgery on Halloween to insert rods, a procedure her mother said went well: "She's in a lot of pain, but doing good, all things considered."
The condition also doesn't stop McKenzie from growing, which is causing physical strain on her mother, especially when it comes time for bathing. Angie dreams of having a full lift system set up in the living room and McKenzie's bedroom. "I can't keep picking her up all the time, or I will end up breaking myself," she said.
McKenzie hasn't regained the life of the active, dancing, bike-riding child she once was, but time has brought tiny scraps of improvement.
She can move her right thumb and pinkie just a little, an act that used to be impossible. And while she remains on the ventilator, she can now speak for herself — and doesn't hesitate to do so, her mother said with a smile.
She's made good friends along the way, too. She and Kinley, a fellow 10-year-old in Alabama also paralyzed by AMF, met through a support group and connect regularly online to play a game called Roblox. Support group friends have been so connected that several drove from California and Washington to celebrate an early Halloween with her prior to surgery.
She has links to online friends along the world through a music app and has become an ambassadors of sorts, explaining her condition and how she lives with it.
Angie has had to become an ambassador, too, and while she does what she can, she doesn't feel as supported as she'd like to be by the rest of the medical world.
She remembers having heard about the mysterious, polio-like disease that was striking children when McKenzie first got sick. However, nobody in the medical world suggested to her that might be it, nor tested her for signs. Had they done so earlier and intervened more strenuously, where would McKenzie be now? She wishes she could say.
She's frustrated at the CDC's pace, the numbers of cases that both have and haven't been confirmed, and the way the organization collects data. The CDC is strongly encouraging health departments to send in information about patients that meet the clinical criteria, but that information is still voluntary: AFM isn't on the nationally notifiable list, which makes data hard to collect or interpret.
She'd like followup from the CDC on afflicted children. She wants prescribed protocol for health care providers to follow when a sick child checks in, complete with standard tests. Eventually, she prays for a vaccine.
In the meantime, she just wants answers.
Usually, Angie said, McKenzie is upbeat. But a few days before her surgery, she burst into tears. "'I want to walk again, Mom,'" Angie remembers her saying.
On the purple-painted wall behind McKenzie's hospital bed hangs a sign: This Girl Definitely Can. Angie tries to remind her daughter of that sentiment when she gets low.
McKenzie's condition has led her to personal meetings with some of her favorite entertainers, including singers Sabrina Carpenter and Shawn Mendez and a professional gamer and YouTube personality known as Dan TDM (next on the hoped-for list: Ed Sheeran). In 2016, some 75 mid-Willamette Valley construction firms and other donors joined forces to create a fully handicapped-accessible, 1,750-square-foot home for the Anderson family where McKenzie could live more comfortably. She's been the subject of a CNN story and other media attention. She's part of a Johns Hopkins study, just beginning, that will look at DNA for AMF susceptibility.
In short, Angie said, McKenzie has already accomplished things she didn't think were possible. So her other dreams — ziplining, early graduation from high school, even one day dancing again — may not be far behind.
"She's got a lot of big ambitions," Angie said. "She does not let this disease define her."
Angie won't, either. "I'm going to fight," she said, "till I get what I need."