ALBANY, Ore. — An Oregon mom is watching helplessly as kids across the country are stricken with the same, mysterious disease that drastically altered her daughter’s life years ago.
It’s the paralyzing virus, Acute Flaccid Myelitis, prompting headlines and warnings from the Centers for Disease Control, where staff admit they don’t know what causes it or how to treat it.
Angie Andersen said Saturday she feels the agency is ignoring research opportunities because the virus is still statistically rare; a few hundred American children have been stricken with AFM since 2014.
“This is turning into like a modern-day polio, and if they wait for these numbers to hit the thousands, that’s criminal,” Angie Andersen said, sitting in her Albany living room.
Andersen spoke over the sound of a ventilator, rhythmically forcing air into and out of her 10-year-old’s lungs in the next room.
“Without my ventilator, I would not be here talking,” said McKenzie Andersen, lying back on her hospital-like bed, in the middle of her purple room.
Four years after contracting the disease, McKenzie remains a quadriplegic.
It started around Christmas of 2014 with what seemed like a cold.
“My son and I had it. McKenzie was the only one that got sick,” Angie said.
The first red flag, she recalled, came when her then-first grader complained of stiffness in her neck.
Doctors told Angie to try icing it and sent the family home.
Twelve days later, McKenzie’s legs stopped working.
By the time doctors diagnosed the girl with AFM, her fate was sealed.
“I feel that it's ignorance,” Angie said. “Medical facilities, places still don't know about it.”
McKenzie, who spends her time reading books like Moby Dick and the British medical journal Gray's Anatomy, also isn’t shy about voicing her frustration with the lack of knowledge about the disease that stole her ability to play on the beach and run on grass.
“They get a lot wrong, basically everything wrong,” she said.
She and her mother said they’ve never been contacted by the CDC for follow-up research on the virus.
“If somebody in Hollywood had a child that got sick from this, or in the government, it would be like the world came to an end, and there would be millions of dollars poured into research,” she said. “This is just insane.”
For now, they do as many interviews as they can to raise awareness about AFM.
They also focus on milestones.
McKenzie has regained partial use of her left hand, and earlier this year, feeling returned to her right thumb.
She can now twitch it on command.
“We’ve had some progress, and we’re thrilled about it,” Angie said.
They also encourage parents to demand kids stricken with colds are tested for AFM.
“If I knew then what I know now, I would have forced the issue. I would have said, ‘Do this. Please do this,’” Angie said. “Maybe she would have only been a paraplegic.”
As part of her ongoing recovery, McKenzie is scheduled to have a surgery on her spine Halloween morning.
To wish her well or check in on her progress, click here to visit her Facebook group.