Sophia Ayouche has lost the ability to move her right arm, the result of acute flaccid myelitis. The 5-year-old was diagnosed with the rare illness earlier this month, one of a growing number of cases in Minnesota and across the country.
Sophia's parents wonder if a quicker diagnosis and treatment might have limited AFM's effects.
They were among a group of parents who gathered at Children's Hospital in Minneapolis on Thursday to discuss the latest efforts to find the cause of AFM. They were joined by officials from the Minnesota Department of Health, doctors and U.S. Sen. Amy Klobuchar, D-Minn., who listened to the parents' concerns.
According to the federal Centers for Disease Control and Prevention, AFM affects the nervous system, specifically the area of the spinal cord called gray matter. As it does, the muscles and reflexes in the body become weak.
The CDC reports the condition is not new, but there has been an increase in cases since 2014. Still, the CDC estimates that less than one in a million people in the United States will get AFM every year.
There are a variety of possible causes of AFM, such as viruses and environmental toxins, but an exact cause has not yet been narrowed down, according to the CDC.
Federal officials report that at least 62 children in 22 states have been diagnosed with AFM this year. There have been seven confirmed cases in Minnesota children in 2018.
One of them is 5-year-old Sophia Ayouche.
Her father, Mehdi Ayouche, addressed the panel on Thursday, sharing how his daughter first appeared to have a cold on Oct. 1.
After she was diagnosed with strep throat and sent home with antibiotics, Ayouche said his daughter began to lose the ability to move her right arm. Eventually, she was diagnosed with AFM.
"We can all agree this disease has been spreading at an alarming rate since 2014," Ayouche said. "We are here to raise awareness about AFM so it could be diagnosed faster, and affected kids could get the proper support and treatment from medical staff from the first visit."
Klobuchar presented the family with a letter she wrote to the director of the CDC, in which she asked what is being done to research, track and find a cure for AFM.
The CDC responded that the agency is working closely with several state health departments to track the illness and research the cause. In addition, the CDC has developed a toolkit for clinicians about AFM and how it differs from similar neurological illnesses.
The CDC also said poliovirus and West Nile virus are among possible causes of AFM, so the agency recommends people be up to date on the polio vaccination and protect themselves against mosquito bites.
The agency also told Klobuchar it has identified seasonal clusters of AFM in 2014, 2016 and now 2018.
State and federal health officials have said finding a cause will have to be the first step toward creating a vaccine.
Ayouche said while he realizes less than one in a million people in the United States will get AFM every year, the significant recent increase in cases and the severity of the illness are reasons to make funding research a national priority.
"There have been cases reported over the past 10 years, however up to this date, not much has been done to prevent this awful disease from impacting more kids," Ayouche said.
Klobuchar said she would press the CDC to provide continued updates on any progress in research and monitoring of the illness.
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