Chef Hosea Rosenberg, winner of Bravo’s Top Chef season 5, has added spice, flavor and meat to Boulder’s vibrant culinary scene since opening East Boulder’s local butchery Blackbelly in 2014 and his standout Northern New Mexican-inspired restaurant Santo just north of downtown in 2017.
But there’s much more than food on the mind of Boulder chef Hosea Rosenberg right now.
In March, just as Covid-19 was setting in, Hosea and his wife Lauren Feder’s now 3-year-old daughter Sophie got diagnosed with a rare genetic disorder, multicentric carpotarsal osteolysis (MCTO): a skeletal disease which affects bones and joints, characterized by loss of bones in the hands and feet as well as chronic kidney failure. They first noticed the symptoms when Sophie winced when beginning to pursue walking at approximately 18 months.
Initially, doctors told the family that Sophie had a form of juvenile arthritis and began treatment of braces, therapy and medications; it wouldn’t be until over a year later that they received the accurate diagnosis of MCTO.
“The day we received her diagnosis was the scariest and worst day of our lives,” Lauren tells BLDRfly. “We had just been told that our dining rooms would be closing and our livelihood was in peril due to Covid, and we got the diagnosis that our daughter had an ultrarare disorder and there was no treatment or cure.”
Only a handful of people in the world — possibly as few as 30 — are known to have the progressive and degenerative disease, and it manifests differently in every case, with no cure and no effective treatment.
The ‘Miracle Window’
Sophie’s mom Lauren describes Sophie as a “happy, silly and funny little 3-year-old girl.”
She loves life and dancing, and she sings and plays with her friends like all children her age. However, right now for Sophie represents possibly the most critical period of her life — a brief timeframe before the MCTO affects set in as heavily, and where the pain and symptoms are relatively manageable, known as the “Miracle Window.”
While for Sophie, this means she can continue to lead a relatively normal life — aside from the doctors visits, medication and therapy — it’s also a scary time for her parents, Hosea and Lauren, who know they have a very finite amount of time to help stop the disease before it advances.
The couple started a nonprofit foundation, Sophie’s Neighborhood, to raise $2 million in 2020 to fund work on treatments. By hosting a series of auctions of donated items and experiences, they’ve raised over $585,000 since launching the foundation in April.
The main reason for lack of treatment comes down to lack of funding for research, since the rare disease only affects between 30 and 50 people in the world, according to the family. Through the nonprofit, Lauren and Hosea hope to speak with scientists and researchers worldwide to fund their work to find a treatment for MCTO.
The most recent auction earlier this month included virtual cooking classes with Top Chef alumni, fly-fishing lessons and tours, meals and lodging at Montana’s Hardscrabble Ranch, jewelry, fine art, wine and more.
Boulder’s community has also stepped up, with others helping to raise money for Sophie, like Cookies4Cures, an organization founded by 10-year-old Dana Perella which bakes cookies to fund research into rare childhood diseases. The two little girls became fast friends and Dana, who now considers Sophie a little sister, has held cookie pop-ups at the Rosenberg’s Boulder restaurant Santo.
For more information and to donate to Sophie’s Neighborhood, visit here.
Header Image: Chef Hosea Rosenberg and Sophie. Image: Chad Weber.