By Jane Seiss
Ava Janeski, a 4-year-old Severna Park resident, has been hospitalized since October after being diagnosed with a rare condition known as acute flaccid myelitis (AFM). The illness started as a respiratory infection. When Ave complained of a headache, her parents took her to a doctor. Ava was not getting better like her twin brother, who seemed to have the same illness. The family was advised to monitor Ava and her symptoms.
Within hours, Ava was not able to sit up and was having difficulty breathing. Her parents took her to the emergency room at Anne Arundel Medical Center. Doctors recognized her symptoms as signs of AFM. Ava was immediately transferred to Johns Hopkins Hospital. Within 24 hours, she was paralyzed from the neck down and placed on a ventilator because she could no longer breathe on her own. Ava spent a month at Hopkins stabilizing and gaining strength before moving to Kennedy Krieger’s inpatient facility in Baltimore on November 6 for treatment and therapy.
According to the Centers for Disease Control, there is no cure for AFM. The rare condition affects the nervous system, specifically an area of the spinal cord known as gray matter. With AFM, the muscles and reflexes in the body weaken. Scientists do not know what brings on the condition, but they believe it is caused by a viral infection. Cases of AFM have been on the rise since 2014. The CDC estimates that in the United States, fewer than one to two children in a million will get AFM every year.
At Kennedy Krieger, Ava spends three hours in the morning going through a range of therapies: physical, speech, occupational, and e-stimulation exercises. After a midday break for medical care, she spends three additional hours working hard in what is known as the “spine gym.” It is a state-of-the-art center where Ava goes through more activity-based restorative therapy (ABRT) to help her maximize her potential after the spinal damage and paralysis caused by AFM.
Ava has made progress, learning to talk with a tracheal tube in place, managing to turn her neck from side to side, and she recently regained the ability to go to the bathroom on her own. She is not able to swallow and is on a feeding tube. Her spinal damage is severe, and although with lots of hard work she may make improvements for up to 10 years, doctors said she will not likely get much movement back.
While Ava is at Kennedy Krieger, her mom, Amanda, is overseeing her treatment and learning how to care for her. “It is really overwhelming,” Amanda said of Ava’s situation. “My parents are taking care of our son 24/7.” Four-year-old Tristan has autism and attends special education programs in Anne Arundel County. Ava’s dad, Ron, is working. The family does a lot of Facetiming to stay in touch. Ava’s brother misses his sister every day.
“She’s such a happy girl,” Amanda said of Ava, who has always loved to sing and dance. “We promise her Ariana Grande videos to get her to do her therapies.
“She calls herself ‘Baby Bird,’” Amanda continued. “She’s so bubbly and full of life. It is hard on so many levels.”
Ava’s family expects her to be at Kennedy Krieger until February. Her parents will care for her and continue taking her to therapy at Kennedy Krieger three or four times a week. In the future, Ava will also need surgeries. Medical expenses and the cost of adaptions to the family home and vehicles are challenging.
To help the Janeski family as they adjust to a new life, make a donation at www.gofundme.com/princess-baby-bird-afm.