Heartbreak as 8-Year-Old Girl Develops Rare Autoimmune Disorder ADEM Due to COVID-19

Photo: (Photo : John Moore/Getty Images)

An 8-year-old girl from Minnesota has developed a rare autoimmune disorder after she had COVID-19. Doctors have diagnosed Avella Bauer with acute disseminated encephalomyelitis (ADEM), which a virus may trigger. In her case, it was COVID-19, which she had in early March.

The girl's mother, Lani Bauer, has been urging vaccination and mask-wearing, especially as the children return to in-person classes amid the COVID-19 Delta variant surge. Lani hopes that her family's experience will help raise awareness about protecting each other in this pandemic.

"If getting the shot and wearing your mask is one step closer to preventing this to happen to another child, that's what I want to stress," she told NBC News. "I want to stress to make sure you wear your mask."

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How Avella Bauer Developed ADEM

Lani kept Avella from school after she had a headache and mild fever in early March. A week after the child's recovery and return to classes, the family got a call from the school informing them of Avella's behavior. She was acting, unlike her usual talkative and active self. She also hid and slept in one of the tiny rooms in the school.

One morning, Lani could not wake up her daughter when she had a fever, resulting in a seizure. Avella was rushed to the Masonic Children's Hospital, and she has not left the facility since then.

Doctors said that Avella's immune system attacked her body's cells and tissues, causing her brain and spinal cord to swell. They confirmed she had developed ADEM most likely because of COVID-19, which she was positive for. According to Dr. Michael Pitt, there have been less than a dozen documented cases of ADEM in recent months where the patient has contracted only this virus.

Per the National Institute of Neurological Disorders and Stroke (NINDS), ADEM is a brief condition with a generally favorable outcome after a series of treatments. Before COVID-19, children developed ADEM after contracting measles, rubella, or mumps. Symptoms of the rare condition include fever, headache, fatigue, nausea, and vomiting, but severe cases may lead to seizures and coma.

However, Avella's case is considered a rare form of ADEM called acute hemorrhagic encephalomyelitis (AHEM). Pitt said she might not recover due to the severity of the damage to her brain and spinal cord.

Avella's Slow Recovery from ADEM

Pitt's team had to remove a part of Avella's skull because the swelling in her brain was so severe. She has lost her ability to talk, see, and move her arms or legs. The 8-year-old's progress has been slow, but her mother sees every bit of improvement as a victory. Last week, her doctors saw signs of vision, but she will likely be living with a disability for the rest of her life.

The doctor said that most families are not aware of ADEM and its severe side effects. As with Avella's mom, he urges people to get vaccinated and mask up, especially if they have to be around children who still cannot get vaccinated.

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