‘Hard to imagine it’s going to get worse’
The week the coronavirus shut down their restaurants, Blackbelly’s Hosea and Lauren Feder Rosenberg found out their 2-year-old daughter had a rare genetic disorder. Now, they need your help.
by Matt Cortina
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hen Sophie Feder Rosenberg was supposed to start walking, at around 18 months old, she didn’t want to. It seemed like she was in pain. So her parents, Blackbelly/ Santo owner and chef Hosea Rosenberg and Lauren Feder Rosenberg, took her to the children’s hospital. After months of tests and examinations, the diagnosis came back: juvenile arthritis. “We started treating that with medications and physical therapy and a special brace,” Lauren says. “Just shy of her second birthday, she was walking all by herself without pain. Everything seemed to be feeling a lot better.” But there were still some anomalies that first diagnosis didn’t address. Some of Sophie’s bones were underdeveloped, and there was inflammation in her ankles. So a doctor recommended that Sophie undergo whole exome sequencing, the most extensive genetic test available. As they spent months on a waiting list for the genetic test, Sophie continued to get better. She eventually got the test at two and a half years old, and the Rosenbergs waited an excruciating two months until they got the results in March this year. “We felt we had been making so much progress and Sophie was doing so well,” Lauren says. “But hearing she was just passing through phase 1 of a totally different disease, 16
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we were stopped in our tracks. It didn’t compute in any way.” The diagnosis was multicentric carpotarsal osteolysis (MCTO), which presents initially as juvenile arthritis. But, in fact, it’s a rare degenerative disorder that prevents bones and joints from developing and may lead to kidney failure. Only 30 people in the world have been diagnosed with it. No cure or treatment exists today. The Rosenbergs got the diagnosis the same week restaurants — their livelihood — shut down due to the coronavirus. “We stayed in our car and cried because we were supposed to be in the restaurant for a meeting and all this other shit was happening in the world, and it didn’t feel real,” Hosea says. “It was very surreal. The way the doctor described it. It didn’t sound like it could be happening. How does the body start eating away at its own bones? It’s been very sad. It’s been very frightening. I go between being OK, and then there’s days where I feel really depressed.” “As a parent you want to look toward the positive and the growth,” Lauren adds. “Little did we know there could be something entirely different presenting [as arthritis]. That was completely devastating and frightening.” With no treatment or cure for MCTO available, the clock is ticking to stave off developments that could mean Sophie (who MAY 14, 2020
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SOPHIE FEDER turns 3 at the end of ROSENBERG May) loses the use of her has a rare genetic hands, or becomes condisease and her parents (Hosea and fined to a wheelchair, or Lauren) have startneeds a kidney transed a nonprofit to plant. So the Rosenbergs find a cure. started Sophie’s Neighborhood, a nonprofit that’s starting almost from scratch to raise funding and connect with doctors and researchers to find a cure. The need for action is urgent. “The longer it takes for us to start treating her, the harder it will be to make a difference,” Lauren says, adding that she could live with Sophie’s current limited range of motion MCTO has caused “if we could stop this in its tracks and put a pause on it.” “We don’t want it to be so tragic where she’s in a wheelchair or can’t play a piano,” Hosea adds. “We see this window as closing. ... There’s these dominos that are up and if someone tips one over they start to fall, you want to stop it. The longer they fall, it may be impossible to pick them back up. “We’re fighters,” he says. “We want to preserve what we’re experiencing.” And what are they experiencing? Life with a daughter who has no idea that other children don’t have to wear the casts she has to or visit as many doctors as she does. A sweet kid who doesn’t have to figure out how to make BOULDER COUNTY’S INDEPENDENT VOICE
