TEMPE, AZ (3TV/CBS 5) - A baby in Tempe has been fighting Acute Flaccid Myelitis (AFM), a polio-like disease, for months and his mom is hoping to spread awareness about the rare disease so that more research can be done.
"You don't get anywhere without the research and you can't research until you get a good population of patients with it," Alexandria Hernandez, Cooper's mom, said.
In 2018, there have been 165 confirmed cases in 36 states; three of the cases are in Arizona. So far, doctors don't know what causes the debilitating disease.
"Acute Flaccid Myelitis has a lot of us intrigued, and we don't have a lot of answers," said Dr. Frank Lovecchio, an emergency physician and toxicologist. "We do know that it looks like polio. We do know when people are checked for polio, they don't have polio. We do believe that it's caused from a virus, we haven't identified which virus."
AFM attacks the spinal cord and causes weakness in muscles and limbs, which can ultimately affect other bodily functions.
"They might not be able to move their diaphragm, which is responsible for their breathing. They might not be able to walk or move their legs," Dr. Lovecchio explained. "It's a very terrible disease. Fortunately it occurs very infrequently, it occurs in 1 to 2 million."
On Sept. 10, Hernandez got a call from Cooper's babysitter saying he woke up from a nap and wasn't acting like himself.
"He was kind of gray in color and he was still moving his legs but he wasn't moving his arms or lifting his head at all," Hernandez said.
They called 911 and Cooper and his parents lived in the hospital for four months. Two of those months were spent in the ICU.
"The first month was really, he was really sick. It was pretty scary."
Hernandez said the night before, the 8-month-old taught himself how to stand up.
Cooper had to spend several weeks in Texas at a rehab facility to get his legs and arms moving again. In January, he will be going to a hospital in Maryland for more rehab.
"They don't have rehab here in Phoenix, there's no pediatric rehab that takes ventilated patients, so we had to pick a rehab out of state," Hernandez explained.
Meanwhile, Cooper's parents are responsible for keeping up with his physical therapy every day.
"He has a pretty stringent physical therapy routine. I have my boards over there because I have to do electrical stimulation on each muscle group twice a day."
There is medical equipment surrounding Cooper at his home, which his parents are well-trained on. He uses a ventilator, has a feeding pump and a tracheostomy tube.
"Some people recover completely, some people recover mostly, some people have no recovery. And we just, we don't know who gets what," Hernandez said.
Hernandez said at first Cooper was diagnosed with Acute Transverse Myelitis. Dr. Lovecchio said that doesn't surprise him.
"To be honest, it's (AFM) such a rare disease that it'd be unlikely the first physician or two that saw you would figure it out."
Dr. Lovecchio says that while it is currently a medical mystery, he has hope that researchers will eventually come up with answers.
"We've had outbreaks similar to this throughout the history of man and I like to think as a researcher the most important thing is to try to get the information out there, let people know to watch out for it," Dr. Lovecchio said. "I think we'll probably figure out what causes it in the next few years, but we probably won't have a great treatment unfortunately."
Hernandez, who happens to be a pediatric nurse, wants other parents to be on the lookout for the symptoms. She's hopeful that researchers can come up with a vaccine or a better treatment protocol in the future.
"We want to bring more awareness to it because I don't want other people to have to go through it and I don't want other children to go through it, I want it to be researched," Hernandez said.
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