Girl, 10, left with paralyzed arm after case of rare, polio-like disease

Girl, 10, left with paralyzed arm after case of rare, polio-like disease
Posted at 7:22 AM, Oct 15, 2018
and last updated 2018-10-15 03:29:29-04

(CNN) - A rare disease that causes paralysis is a growing health concern after 38 confirmed cases in 16 states this year, but one 10-year-old survivor and her mother say, despite her past diagnosis, the girl is thriving.

Four years ago, Lydia Pilarowski, then 6, had a fever and cough that developed into intense pain and unusual weakness. Suddenly, she couldn’t move her left arm.

Lydia was diagnosed with the rare condition acute flaccid myelitis, or AFM, a serious polio-like neurological illness that affects the brain and nervous system.

The disease starts with a respiratory illness and/or fever but leads to sudden onset weakness, sometimes of the face or eyelids but, most typically, the leg or arm.

When Lydia was diagnosed in 2014, only 120 people were afflicted nationwide.

"We had this day, this beautiful August day, and she started coughing just a little bit before we went to the pool. We got in the car, and she started kind of whining and I knew she had a fever. And after that point in time, it was like our whole life changed,” said Lydia’s mother, Dr. Sarah Pilarowski, a pediatrician in the Denver area.

While some children never fully recover from AFM, Lydia, now 10, has steadily improved over the last four years through physical and occupational therapy.

"A lot of times I ask ‘why me?’ but then a lot of times I'm like, ‘Well, at least it wasn't in my legs or my right hand.’ I'm right-handed, so that would be a lot worse,” Lydia said.

The 10-year-old and her mother say they want to give hope to families whose children are suffering from the disease.

While there is no vaccine or even a specific treatment, there can be recovery.

"We count our blessings every day, to see her being able to do the things that she loves to do. She really is just a normal kid,” Pilarowski said.

There are several possible causes of the disease, but the culprit in Lydia’s case was a pathogen known as an enterovirus, a common type of virus that typically increases in summer and fall.

The immune system’s reaction to the virus is likely what causes the paralysis and not the virus itself.

Since August 2014, when the U.S. Centers for Disease Control and Prevention began tracking the illness more closely, the agency has confirmed 362 cases.

Thirty-eight cases have been confirmed in 16 states this year, with several additional cases recently reported in Illinois, Colorado, Washington and Minnesota.

The CDC says it is actively investigating the cases.

AFM is considered similar to polio, also known as poliomyelitis, which “caused more than 15,000 cases of paralysis [every] year in the U.S.” in the early 1950s.

A vaccine for polio was created in 1955, and no cases have originated in the U.S. in nearly 40 years.

Officials emphasize AFM is a rare disease and that the best ways to be safe, especially with flu season around the corner, are to cover your mouth when you cough, sneeze into your elbow and wash your hands.

Copyright 2018 CNN, CDC, Universal, Library of Congress, Pilarowski Family. All rights reserved.