Racing to understand the polio-like illness paralyzing kids

JUDY WOODRUFF: For the past few years, a mysterious
polio-like illness has been paralyzing children in the United States, often striking after
a mild illness, peaking every other year, and reaching record highs in 2018. It’s called acute flaccid myelitis, or AFM. While it’s extremely rare, cases were reported
in 39 states last year. But doctors and researchers say they still
don’t know what causes it or how to stop it. Amna is back with that story for our weekly
segment on the Leading Edge of science, technology and medicine. CAMDYN CARR, Patient: Will you hold my head? WOMAN: I am holding your head. AMNA NAWAZ: Four-year-old Camdyn Carr begins
every day like this. WOMAN: Push, push, push. More down. More down. CAMDYN CARR: I can’t. WOMAN: You can. AMNA NAWAZ: Hours of therapy at Baltimore’s
Kennedy Krieger Institute. WOMAN: Do you remember what that does? AMNA NAWAZ: Camdyn is relearning what his
dad, Chris Carr, says he knew just weeks ago. What else do you remember about him before
he got sick? What was he like? CHRIS CARR, Father of Camdyn Carr: Oh, he
was just hell on wheels. Can I say that? (LAUGHTER) AMNA NAWAZ: I think you just did. CHRIS CARR: I mean, as soon as he hits the
floor, he’s nonstop until he goes to bed. AMNA NAWAZ: In late August, Camdyn developed
a sinus infection, nothing major. But when he woke up one day dizzy with a swollen
face and having trouble walking, his mom and dad took him to the hospital. Within days, Camdyn’s body began to shut down. For a brief moment, his heart stopped. What went through your mind at that moment? CHRIS CARR: I thought I was going to lose
him. It was hard. But, you know, I had to be strong for him
and show him everything would be all right, hard as it was. But, like, I asked the doctors, is this going
to kill my child? AMNA NAWAZ: Camdyn was revived, but spent
weeks in a medically-induced coma. When he woke up, he was paralyzed, unable
to even talk. Tests confirmed he’d developed AFM. When it strikes, AFM attacks parts of the
spinal cord that control movement, sometimes paralyzing arms, legs, shoulders, hips and
facial muscles. In severe cases, the respiratory system is
also affected, making it hard to breathe. But, strangely, feeling and sensation remain
and cognitive functioning is unaffected. Day by day, millimeter by millimeter, Camdyn
is slowly regaining movement, starting in his toes. Researchers say the chances of getting AFM
are just one in a million. In 2014, when the Centers for Disease Control
and Prevention began tracking AFM, there were 120 confirmed cases. The next surge in 2016 saw 149 cases. In 2018, that went up to 186 scattered across
the country. The CDC has now launched a task force to focus
like a laser on the illness, and the National Institutes of Health, or NIH, an underwriter
of the “NewsHour,” has ramped up their research too. But, so far, very little is conclusive. DR. ANTHONY FAUCI, Director, National Institute
of Allergy and Infectious Diseases: Its either a brand-new virus, it’s an enterovirus, or
it’s an immune response. AMNA NAWAZ: Dr. Anthony Fauci is the director
of the National Institute of Allergy and Infectious Diseases at the NIH. DR. ANTHONY FAUCI: It’s frustrating that we don’t
have the answers, but we feel a degree of urgency here. We feel a responsibility to the public, to
the mothers, to the children, that, even though it is rare, we feel a responsibility that
this is a mystery and we have got to tackle it. It certainly isn’t frustration, forget it,
we can’t figure that one out. It’s, we’re going to figure it out. AMNA NAWAZ: Another mystery? Some develop AFM after an illness, while others
don’t. DR. ANTHONY FAUCI: In a community you may have
hundreds and hundreds of children who get infected, and only a rare one will get it. AMNA NAWAZ: More than 90 percent of AFM victims
are children. The average age of those affected? Just 4 years old. Back at Kennedy Krieger, just next door to
Camdyn Carr is 4-year-old Ava Janeski. Always the performer, this was Ava and her
twin brother just weeks ago. On a Sunday in October, she climbed statues
in a park. Monday morning, she had a fever. Tuesday afternoon, she couldn’t move her legs. By Wednesday, she was on a ventilator, fighting
to breathe. AMANDA JANESKI, Mother of Ava Janeski: It’s
very scary, and to watch them. Especially at this age — she just turned
4 — you know, they don’t understand, and they turn to you and give you that look to
fix it, and when you can’t, it’s — it’s — you feel very helpless. AVA JANESKI, Patient: Will you hold my hand? AMANDA JANESKI: I will hold your hand. And that’s what we have been trying to do
a lot of, is just a lot of hand-holding and just trying to reassure her. AMNA NAWAZ: Ava must now retrain her atrophied
muscles how to move in very basic ways. The work can be excruciatingly painful, but,
in the absence of a cure for AFM, therapy is all that can be done. Ava’s doctor, Cristina Sadowsky: DR. CRISTINA SADOWSKY, International Center for
Spinal Cord Injury: If you want to be a really good pitcher, you’re going to practice pitching
over and over and over again. So, that’s one of the things that we can tell
the parent is that, if you practice, if your child practices this specific movement hundreds,
thousands of times, we have the chance of getting you there. AMNA NAWAZ: Among the most severe cases of
AFM, experts say they have yet to see a child make a full recovery. But, they say, with early intervention and
ongoing intensive therapy, they have seen patients make incredible progress. In 2016, the entire Bottomley family in York
County, Pennsylvania, came down with severe colds, but only Sebastian got AFM. When he started stumbling as he walked, his
mom, Christa, knew something was terribly wrong. CHRISTA BOTTOMLEY, Mother of Sebastian Bottomley:
And Bastian has always been our most coordinated, athletic child. He’s always been very vigorous, very wild,
high-energy. And for him to do anything uncoordinated was
out of the ordinary. AMNA NAWAZ: More than 2,000 hours of physical
therapy later, Sebastian can move his hands and arms more. And $100,000 worth of special equipment, about
half covered by insurance, have helped him regain some hip and leg muscle. But his mom says some things will never be
the same. CHRISTA BOTTOMLEY: It was very hard to watch
me see my child’s personality change before my eyes. And, sometimes, I would watch and be like,
do I even know my own child? But, as he was going through a huge trauma,
I — to me, it was surreal. But, to him, he was very much living this
as a disaster second by second. SEBASTIAN BOTTOMLEY, Patient: This is Chicky
the chipmunk. AMNA NAWAZ: Chicky the chipmunk? SEBASTIAN BOTTOMLEY: Yes, it’s a little hilarious
name. AMNA NAWAZ: But experts say children’s resilience
after the initial disaster is what makes their recovery possible. Kennedy Krieger physical therapist Courtney
Porter. COURTNEY PORTER, Kennedy Krieger Institute:
I find that kids are still really motivated. Kind of any way that you can teach a kid to
do what he wanted to do, whether it’s, you know, pick up a toy from across the room or
just go visit a friend across the room, like, they will want to do it. Whether that means they walked and ran like
they used to, or we put them in a wheelchair and they drove over, I find they’re still
just super motivated to do it, and they’re going to figure out a new way. AMNA NAWAZ: Do you have any doubt that Sebastian
will walk again one day? CHRISTA BOTTOMLEY: Of course I do. Of course I do. That’s not something I tell him, though. Everybody has doubts. But what — if I had — if I had to put my
money on it? No, he is going to walk someday. And, also, that’s something that I need to
believe that in order to push this hard. So, my official answer is, I have no doubt
he is going to walk someday. AMNA NAWAZ: With a little assistance and a
lot of grit, Sebastian continues to move forward. CHRISTA BOTTOMLEY: He’s coming. He’s coming. AMNA NAWAZ: His mom hopes for more awareness
and information about AFM, so that other kids won’t have to follow in Sebastian’s footsteps. CHRISTA BOTTOMLEY: Push those legs. Push. Push. AMNA NAWAZ: For the “PBS NewsHour,” I’m Amna
Nawaz in York, Pennsylvania.

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