TOPEKA, Kan. (WIBW) - National headlines last summer and fall followed an outbreak of children who suddenly developed severe muscle weakness.
Bryson Baum of Topeka was the lone confirmed case in Kansas.
"He's happy go lucky, likes to make noises, he constantly wanted to move," his mom, Jessica, describes him.
That's also why Jessica and her husband Andrew knew something wasn't right that day in June 2018.
"He seemed to have a summer cold," Andrew said.
By evening, Bryson, who was seven months old at the time, was quiet and wouldn't reach for his bottle.
"I picked him up and that's when his whole body just fell," Jessica says.
They rushed him to Stormont Vail's ER, where it soon became clear to the doctors that they needed to fly him to specialists at Children's Mercy in Kansas City.
"He had officially flat lined," Andrew recalls. "(It was) absolutely terrifying."
Jessica said it was the longest drive of her life, not knowing what they would find once they caught up with their little boy at the hospital.
"He didn't talk. He didn't cry. He just laid there, and, to be honest, I didn't know what was going on. I thought is my baby dying. It just looked like he was slowly fading away," she said.
It took three weeks before they'd get an answer. Bryson was one of the early cases in the 2018 outbreak of acute flaccid myelitis, or AFM. The CDC confirmed 233 cases in 41 states in 2018. The average age of patients was five-years old, making Bryson among the youngest cases.
Stormont Vail pediatric hospitalist Dr. Fouad Medlej said, while the definitive cause remains unknown, the theory is a common enterovirus has an uncommon effect in some children. It invades the nerves of the spinal cord or even the brain stem, causing severe muscle weakness.
Dr. Medlej said there is not way to know which children it will happen to, and no way to stop it.
"Even if we catch it before, there's nothing physicians or any health care worker can do to affect the progression of the illness in healthy kids," he said. "We don't have any medications to cut the infection short, or prevent the infection from propagating to nerve involvement."
If it gets to the nerves that control muscles for breathing or swallowing, it can be life threatening.
Bryson spent 30 days in the hospital.
"For most of that 30 days, there was no movement whatsoever, and they didn't know if that was going to be his life," Andrew said.
When he went home, Bryson's only real movement was his head and neck. His arms stayed stiff at his sides. He began physical and occupational therapy, working with both TARC and Capper Foundation.
A year later and nearing his second birthday, he's reaching, flexing most of his fingers, and figuring out how to move his legs.
"Shortly before (he got sick), he was starting to pick up a spoon and start trying to feed himself, and when he was able to do that again, that felt like a huge turning point," Andrew said.
But there's also fear. The CDC began tracking AFM with a 2014 outbreak of 120 cases. Since then, it's spiked every two years, each one with more cases than the next. With the next two-year cycle approaching, there's still no known cause, no proven way to prevent, treat, or cure it.
"I just get more and more worried for other people's children that will possibly have to go through this," Andrew said.
The CDC now has a task force looking for answers. This past summer, they issued an alert to doctors to put AFM on their radar.
Dr. Medlej said doctors should be wary of difficulty swallowing or breathing; weakness in the arms, hands, or feet; or changes in the voice such as hoarseness.
"We've read and seen enough of these cases - mostly read about them - that, as physicians, our index of suspicion is high," he said.
The Baums say they are sharing their story to let other families know to trust their gut if something doesn't feel right.
"(I want people) to watch for signs, and (know) that something that they think is simple can turn into something really big," Jessica said.
As big as his challenges seem, one look at Bryson's smile, and the Baums feel blessed.
"I see that it could be so much worse," Jessica said.
"I pray for him every night to get better and it seems like those prayers are coming true," Andrew added.
You can learn more about AFM at the following links: