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Bravo's Top Chef Season 5 winner Hosea Rosenberg opened up about his daughter Sophie's rare health condition in a post on Instagram on April 28.
Hosea said that his daughter, who turns 3 at the end of May, has been diagnosed with multicentric carpotarsal osteolysis, or MCTO, a very rare condition that is characterized by progressive loss of some of the bones of the hand and feet, as well as chronic kidney failure.
"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," Hosea began his message, which also featured an adorable photo of his daughter. "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."
However, Hosea and his loved ones are staying positive during this difficult time. "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," he shared. "We are researching, networking, and making huge strides. There is light. There is love. There is hope."
Hosea and his family have even started a non-profit organization in honor of his daughter called Sophie's Neighborhood, which is dedicated to raising awareness and funds for research and the development of a treatment and cure for MCTO.
The foundation's website shares a little bit more about Sophie's story, how she was unable to stand up at 15 months, and when Hosea and his wife Lauren tried to help her, they "were met with cries and fussing" from their daughter, who seemed to be in pain. Sophie taught herself to walk on her knees, and when she was 18 months old, Hosea and Lauren decided to seek medical guidance.
After numerous tests and doctor visits, Sophie was diagnosed with Juvenile Idiopathic Arthritis (JIA). Sophie's treatment of immunosuppressive therapy, wearing Ankle-Foot braces, weekly physical therapy, and occupational therapy appeared to be working after a couple of months. She could even walk on her own one week before she turned 2 years old. After undergoing further treatments and procedures, Sophie was running and almost entirely pain free just six months later.
Sophie then underwent genetic testing called Whole Exome Sequencing, which uncovered her correct diagnosis, MCTO.
"The geneticists looked like they had seen a ghost as they delivered the information. They didn’t know anything about the condition, other than the scary reality of what was published in the medical papers they had dug up and what was reported in her genetic test," Sophie's Neighborhood website reads. "And 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. We were told the mutation occurred in her own genetic make up and it wasn’t passed along from mom or dad, but, that Sophie would have a 50% chance of passing it on to her future offspring."
Sophie's family sprung to action to launch Sophie's neighborhood, as well as booking appointments with specialists, reading medical papers, and connecting with doctors and scientists. Unfortunately, many of their appointments and travel plans have been delayed due to the coronavirus (COVID-19) pandemic. However, they have continued working with researchers to better understand the condition and how they can potentially combat it.
Sophie is "doing quite well" and is "better than ever in terms of movement with minimal pain these days," according to the foundation's website. "But, we know the clock is ticking for her and and the others with this degenerative disease. We will dedicate our lives to seeking help through networking and dialogue with experts interested in seeking a treatment or cure," the website says. "Sophie will soon have her 3-day evaluation at Shriner’s in St. Louis this August to find out if there is a recommendation for her, as the destruction will continue to unfold on her body."
But as you can see, Sophie is definitely a fighter. "This little warrior princess is all the light and strength I need in my life," Hosea wrote on Instagram. "She is strong and will be my inspiration forever."
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