Braden Scott is a high school freshman and a “sit-down comic” who focuses on the positive. “He finds the joy and the funny stuff in everything,” said his proud grandmother Mary Pettit. “He’s a real gem.”

Braden lives with his family, jokes and squabbles with his siblings and tells his classmates that “Taylor Swift might rock, but I roll.” His dynamic home life is possible because of the determination and hard work of Braden and his family, after a devastating virus caused a medical crisis.

In 2016, the Scott family went out for a community Fourth of July celebration. The kids all had a mild cold.

But 5-year-old Braden didn’t bounce back from the cold. He started having difficulty swallowing. Then he couldn’t walk. 

His family rushed him to medical care. “While he was in the hospital, he coded out,” Pettit said.

After Braden was resuscitated in the hospital as a 5-year-old, he had labored to breathe on oxygen and life-support equipment. Doctors struggled to understand what was happening. After 18 days, the family finally had a diagnosis: acute flaccid myelitis (AFM).

AFM typically begins with a mild viral infection in young children, often in late summer or early fall. It quickly attacks the spinal column, causing symptoms similar to polio: muscle weakness, paralysis and difficulty breathing and swallowing.

“His left lung, his right arm and the majority of his body was either semi-paralyzed or completely in paralysis,” Pettit said.

Braden spent almost a year in the hospital. When his family brought him home, he was still bedridden and needed intensive physical therapy to regain muscle strength. He required breathing support with a tracheotomy and suctioning of mucus, and he got nutrition through a feeding tube.

Medicaid supported their decision to care for him at home by covering costs their insurance could not. Braden could have entered 24-hour nursing care in an institutional setting, but his parents wanted Braden “home with their family,” Pettit said.

Medicaid helps cover the costs of a night nurse, physical therapy and mobility equipment — care that allows Braden to stay at home. “He and his older brother are just inseparable,” Pettit said. “It would have been really, really hard for him not to be there.”

Medicaid coverage for care at home keeps Braden connected to school and family life, Pettit said. Braden still has paralysis in his right arm, and he can walk some but uses a motorized wheelchair for greater mobility. Ultimately, growing up at home puts him on a track to share his skills and participate fully in community life as an adult.

AFM is rare but life-changing, with a few hundred cases in the U.S. in 2014, 2016 and 2018. Through the advocacy of parents like Braden’s mom Rachel Scott, the Centers for Disease Control and Prevention (CDC) is now tracking AFM, as researchers study its cause and how best to treat it.

“Every person who’s in a situation where their life is so drastically changed by a health issue should have these resources,” Pettit said. “They should be able to get this support.”