Courtesy of Hosea Rosenberg/Instagram
Former Top Chef winner Hosea Rosenberg shared an update on his daughter Sophie’s journey with an extremely rare and painful genetic disorder.
The season 5 champ posted photos of Sophie, 8, via Instagram on Thursday, July 25, and opened up about her experience with multicentric carpotarsal osteolysis — a rare skeletal dysplasia characterized by aggressive resorption of bone and frequently associated with renal failure, according to Rosenberg’s foundation, Sophie’s Neighborhood.
“‘How is your daughter Sophie doing?’ This is a question I am asked constantly.
The answer is complicated. As with many things in life, it all depends on perspective,” Rosenberg began his post, which included a carousel of photos of Sophie in the hospital and enjoying time with family and friends in Colorado.
“Compared to normal, healthy 8-year old kids, she’s not good.
Her feet haven’t grown in years (toddler size), her hands are starting to show disfigurement and they are very weak.
She has trouble with stairs, can’t ride a bike, and needs help opening things.
She gets tired and can’t walk long distances. Her kidneys are slowly failing.
She’s missing groups of bones entirely,” he continued.
“On the other hand, she’s doing pretty great.
She’s happy most of the time, is the cutest little girl in the world, has tons of friends, plays every day, swims a lot, takes lots of adventures, loves school (some of the time), loves to dance, loves to laugh, and can still do a lot with her body.
She is surrounded by people who love her, and plays with her dogs every day. She’s got it better than a lot of people out there, and for that I am eternally grateful.”
Rosenberg, who shares Sophie with his wife, Lauren Rosenberg, went on to say that every six weeks she gets an infusion at Children’s Hospital Colorado and takes multiple medications twice daily.
Sophie also wears splints on her legs and arms at night and braces on her legs every day.
She also visits a slew of therapists weekly.
Courtesy of Hosea Rosenberg/Instagram
“She is constantly in and out of doctor’s offices and hospitals.
Her bones are slowly disintegrating and we haven’t figured out how to stop it,” Hosea said.
“All I know is that she’s doing the best she can do and so are her parents.
She has endless love and support, and my heart is full every time I see her. So how is Sophie doing? She’s amazing.”
Hosea has been open about Sophie’s condition in the past, first revealing the news in an Instagram post in April 2020.
“We cry a lot these days. Not because of the threat of coronavirus, or because our restaurants are hurting, but because of something much more devastating to our family.
Our daughter Sophie, who turns 3 at the end of May, is sick,” he began his message at the time.
“She was recently diagnosed with MCTO (multicentric carpotarsal osteolysis) – one of 30 people to ever be confirmed with this extremely rare genetic disorder.
It’s progressive and degenerative, and at this time there is no cure and no effective treatment.
Her joints – primarily her wrists and ankles – are failing and will continue to degrade. Her kidneys are at risk.”
Courtesy of Hosea Rosenberg/Instagram
Hosea added that “hope is not lost” before announcing that he launched Sophie’s Neighborhood to spread the word on MCTO.
The chef and owner of Blackbelly and Santo in Boulder won New York-based season 5 of Top Chef over fan favorites Fabio Viviani, Carla Hall and Stefan Richter when the finale aired in 2009.
At the time, he told Entertainment Weekly of his win, “I felt confident, I felt happy, I was relaxed.
I really felt good about being there. I felt I deserved to be there. And I was there to show everybody that I had what it took.”
These days, he’s focused on being the best father he can be to Sophie.
“When she rests her head in my arms and tells me she loves me, my life feels completely full,” he wrote via Instagram on Father’s Day.
“There is nothing I would rather be doing with my life than raising, protecting, and teaching my daughter.
Thank you for letting me be your dad!!!”
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