Hosea Rosenberg is opening up about his daughter’s rare disease.
On Thursday, July 24, the winner of Top Chef season 5 shared a post on Instagram about his daughter Sophia, who was previously diagnosed with Multicentric Carpotarsal Osteolysis (MCTO). The 8-year-old could be seen pictured in a hospital bed, laughing with the family’s dogs, and enjoying time with her dad outside.
“‘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 update.
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“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,” he continued. “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.”
However, Rosenberg said that Sophia is happy most of the time and has tons of friends. She loves school, dance and laughing, and is surrounded by people who love her.
“Today, as she does every 6 weeks, she got an infusion at Children’s Hospital Colorado. Twice every day, she has to take multiple medications,” Rosenberg continued. “She wears splints on her legs and arms when she sleeps.”
“She wears braces on her legs every single day. She sees different therapists every week. 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.”
But the proud dad said all he knows is that his daughter is doing her best and she has all the love and support possible.
“So how is Sophie doing? She’s amazing,” Rosenberg concluded his caption.
In April 2020, Rosenberg revealed to his fans that his then-3-year-old daughter had been diagnosed with MCTO, an extremely rare condition characterized by the progressive loss and degeneration of bones in the hand and feet, as well as chronic kidney failure, according to the National Institutes of Health.
At the time, Sophie was just one of 30 people to ever be confirmed with this genetic disorder.
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