Richfield teen fights back from rare, polio-like disorder

Kanani Ali didn't set any swimming records this fall, but competing in the pool was enough for the Richfield High School senior, considering that just two years ago a mysterious disease had paralyzed her legs.

Now, after a hard-earned recovery, she hopes her story will encourage other young people who have contracted acute flaccid myelitis, or AFM, the paralyzing disorder that has afflicted at least 134 children in a national outbreak this year.

Knowing recovery is possible might help kids who are seeing only modest progress after weeks of grueling exercises, she said.

"It really is mentally exhausting, and it is physically exhausting," she said.

AFM made headlines this fall when a cluster of Minnesota children came down with the polio-like disease and the U.S. Centers for Disease Control and Prevention reported a serious national outbreak. Updated CDC figures to be released Monday are expected to show that Minnesota has nine confirmed cases of the still-rare condition.

Medical researchers are still puzzling over the causes of the disorder, which attacks the spinal cord and disrupts nerve signals sent from the brain to the limbs. They suspect viruses and other triggers, but it's unclear why some children, and not others, develop the condition after getting sick, and why outbreaks have spiked biennially in the falls of 2014, 2016 and 2018.

Ali had never heard of AFM before the early morning of Oct. 11, 2016, when she awoke in pain and found that she couldn't move her legs. She had suffered leg spasms the previous day, and pain that made it hard to walk up the stairs at school, but she had dismissed the symptoms.

"I just thought it was exhaustion from practice," she said, "because we had had a really hard set over the weekend."

The paralysis came on so swiftly that her mother thought she was exaggerating and urged her to get up so they could drive to the hospital. Paramedics took her instead. When they arrived at the family's house, Ali could stand. By the time she got to the hospital, her legs couldn't bear weight without buckling.

"I was very scared," she said. "I didn't know what was happening and I didn't know if it was fatal. I didn't even have my laptop, so I couldn't Google it."

After blood draws, a spinal tap and other exams, doctors at Children's Hospital in Minneapolis diagnosed Ali with transverse myelitis, a related disorder, and gave her intravenous immunoglobulin (IVIG) to see if a boost to her immune system would help.

Ali eventually was moved to Gillette Children's Specialty Healthcare in St. Paul, a hospital that specializes in pediatric disabilities, for inpatient physical therapy. Doctors there told her she had AFM, a subtype of the disorder that targets the gray matter that surrounds and protects the spinal cord. The absence of movement and nerve activity in her legs also suggested AFM, though doctors never resolved the diagnostic question because it wasn't going to change her prolonged course of therapy exercises.

Little is certain about AFM, or how to treat it, but the latest research suggests that one-third of patients will make full or good recoveries within a year, while the rest will make modest or no recoveries. The disorder can be fatal if it paralyzes the stomach muscles responsible for breathing.

The CDC hasn't endorsed any therapies and has no evidence that IVIG, steroids or other treatments work — or make AFM worse.

That confusion reflects, in part, a lack of understanding about AFM's causes. Most children who develop the disorder suffer colds first, due to enteroviruses or other common viruses — but some do not. Testing has found viruses in the spinal cord fluid of only four children with AFM, according to CDC reports.

So either AFM has other, unknown or environmental contributors, or doctors aren't testing children in time to pick up traces of the culpable viruses before they clear out. And specialists are still debating whether the disease results from some attack on the body or from overactive responses by the body's immune system.

Ali, however, knew that hard work in therapy was her best shot at recovery. Swimming competitively again became her motivation, which she finds amusing considering how she came to the sport.

When she was in seventh grade, she attended an informational meeting about the high school swim team instead of going to science class. "I just wanted to skip science," she said.

What she found was a diverse and supportive group of teammates and a sport that allowed her to focus deeply and leave any stresses of the day behind.

"It was a way to get out of my head," she said, "and it was really good exercise."

As it happens, it also prepared her for AFM recovery. Swimming is all about minute changes in stroke or mind-set that allow the athlete to shave seconds off race times. Therapy in and out of Gillette was all about incremental gains in movement — wiggling toes, then moving feet, then moving legs, then standing.

When Ali returned to the pool in the summer of 2017, she had progressed from a wheelchair to a walker to crutches. She gave up on competitive track and skiing, but not swimming.

"If I couldn't walk," she said, "I was going to swim."

High school coaches hired her to help with summer swim lessons and spent time with her in the pool developing a new stroke. Until then, Ali had powered herself through the water with her legs, but now she would have to rely more on her arms.

Returning to the pool for her junior season in 2017, she finished last in every race — competing mostly in the long 500-meter heats. But by the end her times were improving.

Her teammates had supported her during her inpatient recovery: They visited her at the hospital, printed up "Swim for Kanani" T-shirts and held fundraisers. When her senior season rolled around, they voted her team captain. She was also voted "team mom" — the go-to athlete if teammates had any frustrations.

"Most of the time, captains are faster swimmers that the younger kids look up to because they are dedicated," said Richfield assistant coach Amy Knutson. "Kanani is just dedicated in a different way. ... She's so positive and genuinely wants to connect with everybody on the team. The girls see her as this role model who can conquer big things."

Ali said she feels fortunate, though she has only 80 percent of the strength back in her left leg and wears leg braces because she can't pull up her ankle on her right leg.

Whether children in the 2018 cluster of AFM cases will make as much progress as Ali is unclear. Six months after onset is a key point at which doctors hope to see damaged nerve cells rebranching and restoring signals between the brain and dormant limbs.

After that, one option is surgery to transplant healthy nerves that can kick-start neural activity and motion.

Quinton Hill of Lakeville, for example, was flown to a specialist in Baltimore after his AFM attack this fall. He has since returned home and is doing five hours of therapy at a Gillette clinic per week. The 7-year-old's wrists and hands work, but his upper arms don't move, his father said. Surgery could be an option this winter.

Ali, 17, said she just wants to serve as motivation for the other children, recalling the way her teammates inspired her when she got discouraged by the slow progress of therapy. "They would tell me, 'you're doing so good, keep trying!' " she said.

With her senior swim season over, Ali is bracing for a new challenge: picking a college at which to study animal biology, or maybe law. She applied to 17 schools. After two years of single-minded focus, that kind of choice is unnerving.

"That was way too many, and I'm very indecisive," she said. "So it's going to be hard."

Jeremy Olson • 612-673-7744