Restoring movement with innovative treatment
Marc Sosin
The day 9-year-old Marc hobbled home from the bus stop while leaning on his little brother, life changed dramatically at the Sosin house. His ankle appeared hugely swollen and his parents knew then that something wasn’t right.
“We’re four years into this,” says Liz Sosin about her son’s ongoing struggle with chronic recurrent multifocal osteomyelitis (CRMO), a rare inflammatory disorder affecting an estimated one in a million children. There’s no known cure.
CRMO causes bone lesions—masses of inflamed cells—resulting in swelling and making movement painful, even excruciating.
By the middle of fourth grade, Marc was housebound, crawling between his bed, the bathroom, and the couch.
Richard K. Vehe, M.D., a pediatric rheumatologist at the University of Minnesota, had confirmed the diagnosis made by other University specialists.
“Thank God for Dr. Vehe,” says Marc’s dad, Phillip. But the nonsteroidal anti-inflammatory drugs he gave Marc had stopped working. Ultimately, Vehe turned to infliximab, a different drug that required hospital infusions. Six weeks of treatment were expected before Marc would experience noticeable improvements.
But just six days later, Marc shocked his family by dropping his crutches and running through the house. The drugs had taken effect almost immediately. “It was kind of like Tiny Tim in the Christmas Carol,” says brother Ben, now 11.
Now in seventh grade, Marc receives infliximab regularly and continues to experience some pain. “Having CRMO may be tough, but it’s a great life lesson,” he says. “I’ll remember this my whole life, and it will define my character.”
Says Vehe: “When Marc is well, his academic, athletic, and family life are great. What we need, however, is more research, so we can figure out how to deal [CRMO] a knockout punch.”
Making that more likely is a new University pediatric rheumatology fellowship program being created with support from the Wasie Foundation, a Minneapolis-based private organization. The program will improve pediatric rheumatology research and treatment, aimed at helping kids like Marc.
