By Janhvi Bhojwani -
NBC News
A Minnesota woman, whose daughter has been hospitalized since March, urges people to get vaccinated and wear masks as children return to school and the delta variant spreads.
Lani Bauer's daughter,
Avella, 8, was diagnosed with
acute disseminated encephalomyelitis (ADEM), a disease she developed after testing positive for COVID-19.
In early March, Avella had a slight fever, so her mother kept her at home for a few days.
The fever disappeared by the end of the week and she was able to return to school, but the girl was behaving strangely.
"I got a call from the after-school care service saying that I had to go get her because she wasn't acting like she normally does and she was sleeping in a small room," Bauer said.
The average daily deaths from COVID-19 in the US tripled in the last month
Sept.
15, 202100: 39
On Saturday, Bauer woke up to find her daughter unresponsive, so she rushed her to the hospital.
After performing several tests, he was diagnosed with ADEM and COVID-19.
The girl is now completely paralyzed and has been in hospital ever since.
ADEM is an inflammation of the brain and spinal cord that damages myelin, the protective coating that lines neurons throughout the body's nervous system.
Michael Pitt, Avella's pediatrician at the University of Minnesota M Health Fairview Masonic Children's Hospital, explained that
this immune system disorder is often caused by viral infections
.
In Avella's case, Pitt said,
the only virus he tested positive for was COVID-19.
"We are seeing an extreme case that is very, very rare, but it is definitely something we want to prevent," he said.
Avella Bauer, 8, was diagnosed with acute disseminated encephalomyelitis (ADEM) in March Photo courtesy of Lani Bauer
Since the pandemic began, there have been dozens of cases that link COVID-19 as a trigger for ADEM
, Pitt explained.
Most children with it regain most of their functions four to six months later.
Avella is an exception: she suffers from a rare form of ADEM called AHEM
(acute hemorrhagic encephalomyelitis), in which the damage is so severe that it may not be reversed.
Avella, whom her family describes as an athletic, smart and funny girl,
now cannot walk or speak and is fed through a tube.
Bauer recalls that her daughter's teacher had to constantly change seats because Avella was able to make even the quietest children talk.
This is what some teachers think about forcing them to get vaccinated or use the mask for the return to school
Aug. 25, 202104: 18
"Before this incident, she was a very healthy girl, she
never even vomited," said Bauer, who assures that "Avella was learning chess so well that she could teach her friends to play."
Since ADEM was diagnosed, due to severe swelling in her brain,
Avella has had the front of her skull removed.
Although progress has been slow, Bauer recognizes that each advance is a victory and that he has taken small steps toward his recovery.
Due to the damage caused to her brain by ADEM, Avella cannot see since she arrived at the hospital.
However, a week ago, doctors said they believe he still has some kind of vision, although they don't know how much.
Pitt said that although complications such as ADEM are on his radar, most families do not know.
"There are rare and serious side effects that we can prevent, if we take them seriously," he
said.
Pfizer Study Finds A Booster To Your COVID-19 Vaccine Is Safe And Necessary
Sept.
16, 202100: 29
A year ago, he said, children were the ones who were making sacrifices during the pandemic, and now it is the turn of the adults.
“They were educated at home, they shut themselves up to protect the most vulnerable.
Now it is our children who are in danger, and we ask adults to do the same for them,
”he said.
Bauer wants to share her daughter's story in hopes of preventing it from happening to someone else.
"If getting vaccinated and wearing the mask is a step to prevent this from happening to another child, that is what I want to highlight,
and I want to insist to make sure that people wear a mask," he said.