Top Chef Winner Hosea Rosenberg's 2-Year-Old Daughter Diagnosed with Rare Genetic Disorder

Top Chef star Hosea Rosenberg is opening up about his daughter Sophie's illness.

Rosenberg, who won season 5, shared his toddler's diagnosis in an emotional Instagram post on Tuesday, informing followers about a rare genetic disorder that has impacted her life.

"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. She was recently diagnosed with MCTO (multicentric carpotarsal osteolysis) – one of 30 people to ever be confirmed with this extremely rare genetic disorder," said the father of one, whose family resides in Colorado.

According to the National Institutes of Health, MCTO is a "very rare condition characterized by progressive loss of some of the bones of the hand and feet, usually the carpal (bones of the wrist) and tarsal bones (bones of the ankle), as well as chronic kidney (renal) failure in many cases."

Rosenberg described the disorder as "progressive and degenerative," also explaining that "at this time there is no cure and no effective treatment."

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"Her joints – primarily her wrists and ankles – are failing and will continue to degrade. Her kidneys are at risk. BUT HOPE IS NOT LOST! We have so much support and love from our community, our families, and our friends. We will keep fighting and keep living the best lives we can," Rosenberg said in his post. "We are researching, networking, and making huge strides. There is light. There is love. There is hope."

The family set up a foundation called Sophie's Neighborhood ( to spread awareness. "This little warrior princess is all the light and strength I need in my life. She is strong and will be my inspiration forever," Rosenberg wrote.

On the website, the family details Sophie's story and her early diagnosis.

"At the age of 15 months, Sophie was not able to stand up on her feet. When we tried to aid her we were met with cries and fussing. We didn’t know if that fight was just baby stuff, but it seemed like she was in pain," they wrote. "She taught herself to walk on her knees by then. By 18 months, nothing had improved but we had already started down our investigative path."

After their daughter underwent a "gamut" of tests, she started weekly appointments for physical and occupational therapy. An x-ray determined she had juvenile idiopathic arthritis at 22 months old. "For a while we thought her feet looked like little chubby baby feet, and missed the signs of inflammation. We had noticed her right foot seemed to slightly point inwards and the x-ray depicted this anomaly," they recalled.

Then, over a year later, a genetic counselor diagnosed Sophie with MCTO. "Despite how much wonderful progress she had made over the previous year, she would end up crippled in her hands, feet and potentially other joints, and probably would need a kidney transplant sometime during her childhood," they said.

Sophie, who is scheduled for an evaluation at a St. Louis hospital in August, and her family hope to raise awareness and research. "Today, in April 2020, ironically Sophie appears to be doing quite well – better than ever in terms of movement with minimal pain. But, we know the clock is ticking for her and the others with this degenerative disease," they said.

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