TEMPE, AZ (3TV / CBS 5) – A baby in Tempe has been battling acute flabby myelitis (AFM) for months, a polio-like illness, and his mother hopes to raise awareness of the rare disease more research can be done.
"It's not possible without research, and you can only research if you have a good patient population," said Alexandra Hernandez, Cooper's mother.
In 2018 there were 165 confirmed cases in 36 states; Three of the cases are in Arizona. So far, the doctors do not know what causes the debilitating disease.
"Acute flaccid myelitis has intrigued many of us, and we do not have many answers," Dr. Frank Lovecchio, ambulance and toxicologist. "We know that it looks like polio, we know when people are being tested for polio, they do not have polio, we think it's caused by a virus, we did not detect which virus."
AFM attacks the spinal cord, causing weakness in muscles and limbs that can ultimately affect other body functions.
"You may not be able to move your diaphragm, which is responsible for your breathing, and you may not be able to walk or move your legs," Dr. Lovecchio. "It is a very terrible disease, fortunately it is very rare, it occurs at 1
On September 10, Hernandez received a phone call from Cooper's babysitter, saying he woke up from a nap and did not behave like him.
"He was gray in color and still moving his legs, but he neither moved his arms nor raised his head," said Hernandez.
They called 911 and Cooper and his parents lived in the hospital for four months. Two of these months were spent in the intensive care unit.
"The first month was really he was really sick, it was pretty scary."
Hernandez said the night before, the eight-month-old taught himself how to sit up.
Cooper spent several weeks in Texas rehabilitating to get his legs and arms moving again. In January he will go to a hospital in Maryland for more rehab.
"You do not have a pulmonary clinic here in Phoenix, there is no pediatric pulmonary clinic that needs ventilated patients, so we had to select a rehab clinic outside of the state," Hernandez explained with his physical therapy every day.
"He has a fairly strict physiotherapy routine and I have my boards there because I need to perform electrical stimulation on each muscle group twice a day."
In his apartment, Cooper has medical equipment on which his parents are well trained. He uses a ventilator, has a feed pump and a tracheostomy tube.
"Some are fully recovering, some are recovering, some are not recovering, and we just do not know who gets what," Hernandez said.
Hernandez first said Cooper was diagnosed with acute transverse myelitis. Dr. Lovecchio said that does not surprise him.
"To be honest, (AFM) is such a rare condition that it's unlikely that the first doctor or two who saw you would find out."
Dr. Lovecchio says that while it is currently a medical puzzle, he hopes that the researchers will eventually find answers.
"We had similar outbursts in human history, and I think that as a researcher, the most important thing is to try to bring out the information and get people's attention," said Dr Lovecchio. "I think we'll probably find out what's causing it in the next few years, but we probably will not get any great treatment."
Hernandez, who happens to be a pediatric nurse, wants other parents to look for the symptoms. She is confident that researchers will be able to develop a vaccine or a better treatment protocol in the future.
"We want to raise awareness because other people do not have to go through it and I do not want other children to go through it, I want it researched," Hernandez said.
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