In March 2020, as COVID-19 spread across the country, Hosea and Lauren Rosenberg’s world had already come to a halt. Days before the pandemic forced the couple to shut down their Boulder restaurants, Blackbelly and Santo, they learned that their then two-year-old daughter, Sophie, had multicentric carpotarsal osteolysis (MCTO), a painful, progressively crippling genetic disorder that can be life-threatening due to its accompanying kidney failure. Sophie shares the disease with approximately 30 to 50 other people on the planet.
In the past, the heartrending prognosis might have been the final word. Today, however, parents like the Rosenbergs are leading searches for treatments and cures—and in the process, they’re changing how the medical community thinks about these under-researched diseases. “[Sophie’s doctors] basically printed out a stack of papers and said, ‘Here’s…
