Malachi on the Move

Inpatient rehabilitation at Shriners Hospitals for Children — Chicago helps patients who have simple to complex illnesses and disabilities recover from injury or loss of function. Sometimes the cause is a rare disorder, like for Malachi, who came to the hospital in late June. Malachi has neuromyelitis optica spectrum disorder (NMOS), a condition in which the immune system attacks the nerves in his brain and spinal cord. A pediatric hospital in Wisconsin reached out to our team to provide Malachi’s inpatient rehabilitation following a long hospital stay. “He had weakness in both arms and both legs, as well as trouble with his bowel and bladder. He was also weak from the long hospitalization, steroids and a multi-organ illness,” said Sue Mukherjee, M.D., physical medicine and rehabilitation physician and medical director of rehabilitation.

The Chicago Shriners Hospital offers the only onsite pediatric rehabilitation unit in a children’s hospital in the Chicagoland area. The multidisciplinary team provides more hours of one-on-one therapy than most programs. A diverse range of pediatric specialists work with the family on personalized, functional goals for the patient.

“Malachi had the best personality. He immediately lit up a room,” said Ally Bailey, PT, D.P.T., a physical therapist who worked with Malachi. “He had developed quadriparesis, where he didn’t have use of his arms or his legs. Despite this, Malachi was able to make so much progress so quickly because he was dedicated to his therapy sessions. Malachi’s physical therapy at Shriners Hospitals involved doing different activities to help train his muscles to get stronger or things to work on his balance. For instance, we used a boxing punching bag while he was standing on an unstable surface. This worked on his balance by intentionally moving his arms to throw him off balance and challenge his muscles to correct that.”

Malachi was using a wheelchair full-time when he arrived at the Chicago Shriners Hospital’s inpatient unit. In addition to physical therapy, he received specialized services from a clinical dietician to improve his nutrition, and occupational therapists for functional improvements, including sessions in the hospital’s warm water therapy pool. In his free time, Malachi made special slime in recreational therapy that he then "sold" around the hospital. “He said he wanted to help financially support his mom, who was trying to work online while she was in the hospital with him… Malachi is a remarkable young man with such a kind, polite manner,” said Dr. Mukherjee.

Malachi’s treatment goals began with walking. He progressed to walking with a crutch. The staff enjoyed seeing him meet that goal of walking again unassisted. “Eventually that (goal) progresses to him being able to run. So we worked on some running,” Bailey said. He also rode an adaptive bike at the hospital and expects to be back on his own bike at home.

“His hands got stronger and his muscle endurance improved a lot. His organ illness improved. Several extended family members joined us on a family meeting call to learn about his progress and to understand his needs on returning home,” Dr. Mukherjee said.

On the day he left for home, Malachi individually thanked each staff member. “It is so rewarding to work with kids and see their hard work pay off, whether the changes are huge, as they were with Malachi, or small improvements in function that are hard won,” Dr. Mukherjee said.