“She was perfectly happy, healthy. We can’t comprehend it. It doesn't feel real right now.”
On Christmas morning, Isabel Kirby, her sister and brother were opening presents. Her family was enjoying the holiday together, and she had just gotten a brand-new TV.
But as the day went on, Isabel started to feel a pain in her legs. It was slight at first, but within an hour, she said, everything changed.
“My legs went into this big huge pain,” Isabel recalled. “Then they went numb.”
Her parents, Noel and Bret Kirby, thought Isabel might be having growing pains or a charley horse. So Isabel walked upstairs and went to bed to see if it would go away.
The next morning, Isabel was paralyzed from the waist down.
“She was perfectly happy, healthy,” Noel Kirby said. “We can’t comprehend it. It doesn't feel real right now.”
Doctors at Akron Children’s Hospital believe Isabel, a 13-year-old Cloverleaf Middle School student from Medina County’s Chippewa Lake, has acute flaccid myelitis. The rare condition with polio-like symptoms affects about 100 people nationwide each year.
Isabel’s case has been sent to the U.S. Centers for Disease Control and Prevention to confirm the diagnosis.
Physicians believe a virus infected part of Isabel’s spinal cord, which affected nerves that run from her spinal cord to her muscles, causing weakness in her legs.
Doctors said it’s still unclear whether the virus itself or the immune response to the virus — or a combination of the two — causes the condition. Dr. Matthew Ginsberg, a pediatric neurologist at Akron Children’s, said Isabel’s immune system may have tried to fight the virus and attacked an unintended target.
“Instead of her body attacking the virus, it kind of went haywire and started attacking the spinal cord,” Noel Kirby said.
If the damage was done by the virus, medical experts are still unsure how. Dr. Eric Robinette, a pediatric infectious disease physician at Akron Children’s, said in most cases, the virus like the one Isabel caught can lead to a cold or other common illnesses. In extremely rare instances, it can cause acute flaccid myelitis.
Robinette said it's believed that Isabel contracted an enterovirus, a common virus that is easy to catch.
“You don't catch it any different than you'd catch any other viruses,” Robinette said.
He compared the chances of the virus causing this condition to the chances of being seriously hurt in a car accident. People drive cars every day and are safe, but by no fault of their own, serious accidents can happen.
“It's the medical equivalent of a fatal car accident,” Robinette said.
Robinette said researchers also aren’t sure if it's a strain of virus causing acute flaccid myelitis, or something in the patients that leads to it.
Samples from Isabel will be sent to the Centers for Disease Control and Prevention (CDC), which can test and determine if it’s an enterovirus that infected her, and determine whether she has a confirmed case of acute flaccid myelitis.
According to the CDC, there were 33 confirmed cases — including two in Ohio — in 2019 of acute flaccid myelitis. The polio-like condition can cause sudden limb weakness, facial droop or weakness, drooping eyes or difficulty moving eyes, swallowing problems and slurred speech.
There have been 603 confirmed cases nationwide since the CDC began tracking the illness in August 2014. Cases tend to spike every two years.
The CDC is continuing to track and investigate cases of the illness, which it stresses have all tested negative for poliovirus.
In November 2018, the CDC director called for the establishment of an Acute Flaccid Myelitis Task Force to assist in the ongoing investigation to identify the cause of the disease and improve treatment for patients.
Robinette said Isabel’s case could become part of a growing body of research, which would help the CDC narrow down the viruses that could cause the condition — and possibly even develop a vaccine for it.
Immunizations would be ideal, Robinette said, because there currently isn’t a viable way to treat the condition after symptoms present themselves.
Before the polio vaccine was developed, Robinette said, there would be thousands of cases of children like Isabel with similar symptoms.
“Sometimes we forget the shoulders of the giants we’re standing on, and how that’s changed the world,” he said.
Since waking up paralyzed on the day after Christmas, Isabel has started to recover. On Wednesday, she was working with a physical therapist on her mobility, getting in and out of a wheelchair by herself.
Isabel also has undergone plasma exchange treatments, which remove antibodies from her blood that may be attacking her spinal cord and causing inflammation.
Ginsberg said the road to recovery could be long, and there’s a chance Isabel will never walk again. But Ginsberg said she has the drive to get there.
“I think everyone that’s met Isabel knows she has an incredible attitude and spirit,” Ginsberg said.
Isabel said she has started to regain hip movement, as well as some sensation in her legs. She knows it's going to be a difficult process, but she hopes through rehab she can walk again.
“It’s a lot, but I try to just go with the flow,” she said. “Try to push through.”
The community has been coming together to support Isabel and the entire family.
Members of the family’s church, St. Francis Xavier in Medina, have started a meal train for the family, as well as a GoFundMe account.
Noel Kirby said it’s amazing to see the community’s support.
“Everyone's rooting for her,” Noel Kirby said. “Everyone's in her corner.”