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.
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…
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…
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.”
http://www.startribune.com/back-in-the-fast-lane-after-a-frightening-disease/502272511/
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