Lying in an intensive care bed at Children’s Hospital of Philadelphia (CHOP), unable to move, unable to breathe on her own because of a rare infection, Eilyn’s once-bright future was in jeopardy.

A coordinated effort from multiple CHOP departments over several years has brought Eilyn back to where she’s a typical freshman who likes math, reading and “the whole atmosphere” of being in high school.

“At the beginning of all this, we didn’t know if she’d ever walk again,” says her father, Mark. “To go from that shocking diagnosis to all this progress, we’re thankful.”

From camp to intensive care

It began with a mild cold while Eilyn was at summer camp in 2018. There, her right arm became progressively weaker. Then, she couldn’t move that arm. Her parents picked her up and took her to CHOP’s Emergency Department. 

After many tests, including a spinal tap (also known as a lumbar puncture), she was diagnosed with acute flaccid myelitis (AFM), a rare virus-induced muscle weakening disease with symptoms similar to polio. 

The paralysis in her arm spread to other muscles, including her diaphragm (the muscle that controls breathing). which sent her into respiratory distress. She required a breathing tube and was put in an induced coma. “We weren’t sure she was going to make it through the night,” says her mother, April.

She did make it, and she’s been doggedly pursuing progress ever since.

Slow but steady improvement from acute flaccid myelitis

There is no cure for AFM; treatment aims to reduce symptoms and focus on rehabilitation. Eilyn spent 28 days at CHOP receiving plasmapheresis treatment (exchanging her virus-infected plasma with healthy donor plasma) and physical therapy (PT) to relearn how to speak, swallow and move. Studies show that starting PT right away provides the best long-term outcomes. 

April is a physical therapist assistant and, after getting the OK, moved Eilyn’s legs to stimulate the muscles. “I did what I knew,” April says.

Mark, a teacher, read to Eilyn constantly. “Second grade is a huge year for learning to read, and I didn’t want her to fall behind.” Spoiler: Eilyn finished second grade reading above grade level.

She still needed help breathing, so she had a tracheostomy to create an opening in her neck for a breathing tube connected to a ventilator before she was discharged from CHOP, still in a wheelchair. She continued her recovery at Weisman Children’s Rehabilitation Hospital, closer to the family’s New Jersey home. Eilyn spent another grueling three months in therapy before she recovered enough to return home. 

“She was motivated and determined,” April says. “She also learned to be a strong advocate for herself.” 

Next battle: scoliosis

Because of the months-long muscle weakness in her trunk, Eilyn developed severe neuromuscular scoliosis, a sideways curve of the spine. The scoliosis left less room for her lungs, limiting her breathing, and she remained on a ventilator.

For treatment, her family returned to CHOP, this time under the care of orthopedic surgeon Jason Anari, MD, and the Spine Program. The Spine Program is part of CHOP’s Division of Orthopedics, consistently ranked among the best in the nation by U.S. News & World Report’s Best Children’s Hospitals list of specialties.

After an exam, imaging and other tests, Dr. Anari recommended Eilyn receive MAGEC growing rods, an internal bracing system that uses an external remote-control device to expand the rods as the patient and their spine grow. This approach corrects the scoliosis curve.