ST. LOUIS, Missouri – One moment a child is healthy and running, full of energy.
The next, a virus has robbed him of healthy legs and arms.
The disease, called acute flaccid myelitis, is rare but it usually pops up in young, healthy children like nine year-old Brandon Noblitt.
Three years ago, his life took an unexpected turn.
"I tried to get out of bed and I just collapsed."
"He was perfectly healthy before," remembered his father, Brian Noblitt.
"Never really had anything, any serious diagnosis or any serious health problems."
"He was... normal."
An MRI revealed he had AFM: a polio-like illness that causes sudden paralysis. It's rare, but often pops up after an infection like the common cold.
Brandon remembers the diagnosis.
"I was thinking wow, what if I never get better?"
Brandon had to adjust to life in a wheelchair.
Nerve surgeon Amy Moore was determined to get him out of it.
"The humanism of it... it hurts," explained Dr. Moore who works at Washington University in St. Louis,
"Because these are normal kids."
TREATMENT: To prevent infections by AFM-related viruses, it is recommended that people keep their polio vaccines up-to-date and to avoid exposure to mosquitoes by using mosquito repellent and not being outdoors at times where mosquitoes are more likely to be out, such as dusk and dawn. If doctors suspect acute flaccid myelitis, you may be treated by neurologists as they are trained in nervous system conditions. There is no specific treatment for this condition and there is no clear evidence that any treatments tried in the past, such as immunoglobulin, corticosteroids, plasma exchange, and antiviral therapy have affected recovery. Treatments that may help may vary based on symptoms.
In a surgical first for AFM.
Dr. Moore transfers less important nerves from one part of the body to help the paralyzed leg.
"We can cut it and remove it and re-suture it under a microscope and at a millimeter a day, inch a month, foot and a half a year, we get muscle function."
It was a long wait but eventually, Brandon's patience paid off.
His leg muscles started to quiver.
"It was a sense of celebration," he recalled.
"A sense of that 'wow' this is really starting to happen."
ABOUT "CAPTURE": Collaborative Assessment of Pediatric Transverse Myelitis: Understand, Reveal, Educate (CAPTURE) is a study led by Dr. Benjamin Greenberg in Dallas, Texas. The study is the first of its kind and is in collaboration with several health care centers across North America. The study determines the current state of Pediatric TM (including AFM or acute flaccid myelitis). It will eventually lead to a better understanding of the condition as well as information on diagnosis, treatment, and outcomes, which can lead to specific treatment and technology in the future. Participation is online only. It includes a survey at different times after being diagnosed, as well as a review of treatment records.
"I'm not making them normal but giving them, waking up muscles to make them stronger so they can stand and so that they can walk," said Dr. Moore.
Dr. Moore says it can take four years to get the full effect.
Brandon doesn't mind waiting. He's just glad to be out of his wheelchair.
"I feel like I'm still getting better," he said.
"I feel great. I can keep up with my friends and everything."
If this story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Jim Mertens at firstname.lastname@example.org or Marjorie Bekaert Thomas at email@example.com.