SOUTH SALT LAKE — It is never too difficult to tell quite how 22-month-old Penelope "Peep" Anderson is feeling, her mother says.
"She's very expressive. She's a happy girl. She definitely will let you know what she does and does not want, with just her facial expressions, (which are) are just very intense," Alanna Harley says of her daughter.
"She uses her whole face. And why wouldn't you, if that's what you can control the most?"
Control — that is the essence of what Peep suddenly lost when she was just 7 months old, and has been steadily trying to regain ever since with the loving help of her family and a wide-ranging team of doctors.
On what was otherwise a typical day on Oct. 20, 2017, Harley, of South Salt Lake, had just returned home from running some errands when she turned her attention to Peep and did a double take. Her daughter's face was drooping — in fact, her whole body seemed lethargic.
"I let her arms go, and they just fell, and her legs did the same thing," Harley said.
Following Peep's emergency helicopter ride to Primary Children's Hospital, doctors determined within about 36 hours that she had been stricken with a rare disease mostly affecting children called acute flaccid myelitis, which can come on suddenly and can cause total paralyzation from the neck down.
As they grappled with the crushing news, Peep's family turned their attention over the following weeks to simply surviving. In the most literal sense, and out of necessity, so did Peep and her doctors.
"We spent a month up at Primary getting her stable and getting ready to come home," Harley said.
Accute flaccid myelitis, sometimes called AFM, is a condition affecting "the area of the spinal cord called gray matter," which causes a person's muscles and reflexes throughout their body to weaken, according to the Centers for Disease Control and Prevention.
Fortunately for Peep, in most cases improvements can be made in terms of restoring a degree of movement and strength, though the window in which that can happen is relatively limited — usually about one year at the most.
"Almost all kids improve from where they are at their worst, for the next six months to a year," said Dr. Gary Nelson, a clinical assistant professor of child neurology for the University of Utah and Primary Children's Hospital. A total recovery is rarer, he said.
Nelson is one of several doctors to have worked with Peep as she has undergone intensive physical therapy on her arduous journey to recapture some degree of movement in her arms and legs.
"She has made amazing strides in therapy, but she has also had a lot against her. She doesn't talk, which is a big hurdle for us — she gets very frustrated because we can't communicate with her," Harley said. "We have an amazing group of therapists that work with us in our home."
That includes both physical therapists and occupational therapists, who have helped Peep regain movement in her left shoulder and her left and right elbows — as well as a little "pointer finger" she can now use, her mom says.
Peep's work with therapists is in addition to the stretches her mother helps her complete twice per day.
"It is a constant battle," Harley said.
Although the regaining movement typically becomes less feasible after a year, Peep's body has proven resilient and "we have seen very much differently" in the several weeks since she hit her 12 month mark, according to Harley.
"She continues to make improvements in her strength and (movement)," she said.
Nelson said he is "very impressed to see the degree of recovery (Penelope) has made, especially in her upper extremities."
In addition to her acute flaccid myelitis, Peep has dealt with several severe health complications, respiratory problems and scoliosis in her young life. She has also had serious heart problems, which doctors still haven't been able to "clearly relate to what happened to her spinal cord," Nelson said.
During one hospitalization in February due to a respiratory infection, Peep hovered near death, Harley said.
The list of Peep's complications is "very very long" and is "kind of explained by the AFM and kind of not," Harley said.
In light of everything Peep has experienced, Nelson said he is happy to have witnessed her resilience — not just physically, but emotionally.
"She's continued to develop … to be a very happy interactive little girl," he said.
For those as young as Peep trying to regain strength bit by bit, the process day after day requires mental and physical endurance under duress, Nelson said.
"It's very taxing on the kids because you're basically trying to push them to use muscles that are not working very well," he said.
The CDC says more than 90 percent of acute flaccid myelitis patients are children, with a median age of 4 years old.
Precisely what causes acute flaccid myelitis is still a matter of study, though the illness is believed to have links to certain types of the enterovirus and coxsackievirus, and the CDC says more than 90 percent of patients "had a mild respiratory illness or fever consistent with a viral infection before they developed AFM."
"Viral infections such as from enteroviruses are common, especially in children, and most people recover. We don't know why a small number of people develop AFM, while most others recover," the agency says. "We are continuing to investigate this."
In 2014, federal authorities asked states to begin more closely tracking cases of acute flaccid myelitis after noticing an uptick in diagnoses, Nelson said. From August to December 2014 — the first three months of which are considered peak season for such cases — there were 120 confirmed cases reported nationwide.
In 2015, the number of cases fell to 22, but soared in 2016 to 149. In 2017, there were just 35 instances of acute flaccid myelitis, but cases have spiked again in 2018, with 165 reported nationwide as of mid-December.
Recent growth in the number of acute flaccid myelitis cases in the United States has caused alarm among medical professionals, including at the world-renowned Mayo Clinic, which has called the trend "concerning."
"I think the entire medical community is involved, is sharing information and wants to find out an answer as soon as possible," Dr. Kenneth Mack, a Mayo Clinic neurologist, recently told that health care system's internal news service, speaking about the unknowns related to the disease's cause and uptick in prevalence.
"Unfortunately, it's going to take us more time."
Nelson agrees that it is worrisome that "we can't say for sure how to prevent it from happening." He said there is also no known way to treat the cause — only the symptoms — and it is unknown whether its prevalence could continue to rise.
"We don't know how much this pattern is going to continue — if we're going to continue to see more cases over time," he said.
Resource for others
For those who have become part of acute flaccid myelitis' growing statistics, "it is a change in your world," Harley readily admits.
She says the increase in the number of cases this year is "scary" and makes her want to reach out to other families as they joins the ranks of those touched by the illness. It can help significantly, she said, "just to talk to that one specific group about your life experience."
Harley has become involved with a Facebook page where affected families share stories and important information, she said.1 comment on this story
She has also shared Peep's progress on a GoFundMe site set up to address her daughter's medical costs, and she has started drumming up donation support among her friends for the Transverse Myelitis Association, a nonprofit which supports patients of acute flaccid myelitis and several similar conditions.
Harley's goal, she said, is to "raise awareness about AFM so other parents don't have to find everything on their own."
"When we were handed the diagnosis, it (felt) like we were the only ones," she said, and she wants others to know "there are people to just meet for coffee and just meet with you."