Mom's Facebook Post Helps Another Family Through Dangerous Polio-like Disease
A rare disease related to polio called Acute Flaccid Myelitis (AFM) has been on the Center for Disease Control & Prevention (CDC)'s radar since 2014, but parents are becoming increasingly aware of it, as well. A mom named Rachel Scott has dedicated time to that cause, sharing the story of her son's battle with it three years ago. And it's thanks to Scott that another mother named Elizabeth Cardone was able to recognize the symptoms in her own child.
Scott's son Braden was 5 years old when he suddenly lost his ability to swallow. Days later, he couldn't walk and lost the ability to move everything but his left hand's fingers. A week later, he was diagnosed with AFM.
Rachel Scott
"He's still fed through a tube because he still can't swallow ... but we're confident that if we had known sooner, we could have stopped it from spreading, and perhaps the effects wouldn't have been as severe," Scott told Good Morning America.
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Cardone read about the Scotts' experience on social media and her heart went out to the family. "I remember seeing this and just being struck in my core of this family and what a just horrific and tragic thing they were dealing with. You go from a common cold to on life support," she told GMA.
Courtesy of Elizabeth Cardone
It was just last month that Cardone's two-year-old son Corbin was fighting off a cold. He had started to recover from respiratory problems, but when Cardone set him down next to his crib one morning, the little boy suddenly collapsed, unable to walk. The concerned mom soon connected the dots, thinking back to what she had read about Braden's AFM symptoms. She reached out to Scott, who she has never chatted with previously, and then asked Corbin's pediatrician if he might have AFM.
Courtesy of Elizabeth Cardone
As it turned out, he did, and he was able to get treatment rapidly. Although he was initially unable to stand or walk, he was on the move just four days later.
"He ran out of the hospital ... We carried him in unable to walk, and very weak in his legs. He didn't have any reflexes in his lower extremities, and two weeks later he ran out. He's made a full recovery," Cardone told GMA.
She tells Parents.com what it meant to her to connect with Scott: "Getting connected to Rachel was one of the many ways God provided for our family in a tangible way during the darkest days of our lives. She had walked the road we were embarking on and she held us close as we faced treatment decisions and consults with various specialists."
Scott says making Cardone's acquaintance under these circumstances was an intense experience. "It's so difficult to relive those terrible days of watching your child lay in the ICU and get weaker and not have the answers, but I was so grateful to have the experience and knowledge to help her get him on the right path," she says. "Corbin started treatment within 48 hours of his first symptoms; Braden didn't get treatment until after a week. Corbin ran out of the hospital, and Braden came back home in an ambulance, still on a ventilator."
Experts have noticed that spikes in AFM cases seem to occur every two years. The CDC has confirmed 28 cases this year, and last year, there were 228 confirmed cases of AFM across 41 states in 2018.
Scott wants parents to know that AFM is rare, but serious. "If a child is experiencing limb weakness, or any difficulty swallowing, speaking or breathing following a cold, parents should seek medical care immediately," she notes.
As Cardone's story proves, timely diagnosis and treatment is critical in stopping the progression of the paralysis and improving children's recoveries, Scott points out. The two moms hope that by sharing their stories, they'll not only raise awareness but encourage researchers to continue to investigate what causes AFM and how best to treat it. With hope, more knowledge will preempt other children from contending with the disease.
