Girl, 2, Battles Rare Polio-Like Illness In Batavia
BATAVIA, IL — A 2-year-old Batavia girl is in the fight of her life against a rare illness that affects roughly 1 in a million people. Julia Rose Payne came down with the same cold her two sisters had, but woke up the next day having difficulty moving and struggling to breathe. The diagnosis was acute flaccid myelitis (AFM), an incredibly rare disease that has been popping up in the United States roughly every two years and has currently hospitalized Payne and two other children.
Since she as diagnosed with AFM and admitted to Lurie Children’s Hospital on Sept. 13, the vibrant, red-headed 2-year-old has undergone a tracheotomy and plasmapheresis, a treatment that cleanses blood plasma.
Julia is one of two Chicago-area patients being treated for the illness, along with an 8-year-old girl from Chesterton, Indiana, according to ABC Chicago. A total of 38 AFM confirmed cases have been confirmed in 16 states, according to the CDC.
In a GoFundMe campaign, Julia’s parents wrote that she is currently stable. They say they are “excited to talk about the next weeks and months instead of hours and days.”
A spokesperson for Lurie Children’s Hospital said in an email that Julia will be discharged Wednesday and transferred to Shirley Ryan AbilityLab, where she will work to regain strength and movement.
Payne’s parents are among dozens of other parents throughout Minnesota, Indiana, and Illinois who are helping their children fight through with this hard-to-understand illness.
According to the Centers for Disease Control and Prevention (CDC), AFM affects the gray matter of the spinal cord and can lead to respiratory failure, paralysis, and even death. Doctors are still struggling to understand the rare illness, which first appeared in the U.S. in 2014. Between August 2014 through August 2018, the CDC has confirmed 362 cases of AFM across the country.
Symptoms of AFM can resemble the flu at first, with patients experiencing leg and arm weakness and difficulty moving their eyes. Later symptoms are similar to polio, including facial drooping and difficulty speaking and swallowing.
According to the CDC, some causes of AFM may include West Nile virus and poliovirus, but they’re still searching for more answers. Genetic disorders and “environmental toxins” may also trigger AFM, but for some patients a cause is never determined, CDC says.
In the meantime, Julia’s family says they are thankful to the doctors and nurses at Lurie, along with friends, family members, and strangers who have shown their support. They wrote, “Your love is truly beyond measure.”
Visit the Lurie Children’s Hospital website for more information on acute flaccid myelitis. Click the link to donate to Julia Payne’s GoFundMe, which has already raised more than $14,000 to help her family with ongoing medical expenses.
Image via GoFundMe; Patch is a GoFundMe partner