Courtesy Hosea Rosenberg
Top Chef star Hosea Rosenberg and his wife Lauren are doing everything they can to help find a solution to their daughter Sophie's rare genetic disorder, including hosting a silent auction this weekend to help fund a cure.
In April, the season 5 winner revealed to his fans that his 3-year-old daughter had been recently diagnosed with Multicentric Carpotarsal Osteolysis (MCTO), which is 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.
Sophie is just one of 30 people to ever be confirmed with this genetic disorder.
Courtesy Hosea Rosenberg Sophie Rosenberg
Speaking to PEOPLE about the diagnosis, Hosea and Lauren Rosenberg recall noticing something was off with their daughter when she was nearing her first birthday.
"We’ve always been worried about her, since she was about a year old. We just always felt like something wasn’t quite right," Hosea says. "And it’s so scary as a parent when the kid can’t explain to you what’s going on, at that age they don’t have words to use.”
Because of the rarity of the disorder, doctors repeatedly told the parents that they weren't sure what was wrong with Sophie, who at the age of 15 months was not able to stand up on her feet due to the illness. She instead taught herself how to walk on her knees.
"Any parent, any person, you don’t want to hear a doctor say, 'I’ve never seen that before,' " Hosea says.
"All of these people looked at her and just scratched their heads. We were at Denver Children’s Hospital in Denver, one of the best children’s hospitals in the country, and that’s the last thing you want the doctor telling you about your little baby, that they’ve never seen this."
Courtesy Hosea Rosenberg Hosea Rosenberg and Sophie
Doctors initially began treating Sophie for arthritis because of the inflammation in her joints, but knew that there was something larger at play when the toddler's X-rays showed underdeveloped bone.
It wasn't until the family finally saw a geneticist that they were given the diagnosis of MCTO. "We’re so grateful we got the right diagnosis and we can start researching how we can treat this correctly, because treatment doesn’t exist," Lauren tells PEOPLE. "I’m just so grateful that we did this additional genetic test."
Courtesy Hosea Rosenberg Sophie
To date, there is still no cure and no effective treatment for MCTO, which is why the couple have set up a foundation called Sophie's Neighborhood, and pulled together a scientific advisory board to help facilitate research on the degenerative disorder.
"It is possible that an existing drug could help her. If we have to develop a new drug it could take years; you have to develop clinical trials and it could take years to prove its efficacy as well as its safety," Hosea says.
"That’s why we’re in this race against time. She’s little, she’s showing signs, she has a tough time already, but it’s going to get a lot worse for her," he adds. "Even if we can’t reverse it but we can just stop it in its tracks, that would be a good thing for us right now."
Courtesy Hosea Rosenberg
The foundation is currently trying to raise $2 million to fund lab research to discover ways to help those with MCTO, and will be hosting a virtual silent auction on Saturday, Aug. 15. They have already secured $300,000 from previous fundraising efforts.
"The $2 million is for research," Lauren explains. "This will initiate projects we would like to accomplish from identifying a target for a therapeutic through an animal model, to developing a cell line and studying how we can correct the mutation through advanced technology, a natural history study, and others. We want to have many 'irons in the fire' and simultaneous efforts as we work with urgency to find the best path. Everyone who has MCTO is going to benefit [from our fundraising]. And because all of the work will be published, everything that is discovered can be used for other diseases with similar pathways, so it won’t just be for MCTO."
The auction is open to people all over the country, with exclusive items and experiences up for grabs. Some high-ticket items include an African Safari, diamond jewelry from The Woods Fine Jewelry, a stainless steel Viking 5 Series Propane Grill, and one-on-one online cooking classes with Top Chef contestants Jennifer Carroll and Fabio Viviani, and much more.
"Because of the state of our world and not being able to do a live event, this seemed like the best way to attract people to our cause," Lauren says. "I love that we’re going to be able to make this national footprint with this virtual experience."
As for how Sophie is holding up amid the pandemic and her treatments, the proud parents say that despite the setbacks she's "a happy, funny, smart little girl."
Courtesy Hosea Rosenberg Sophie
"I think she knows something is a little off with her health, but we haven’t had this talk with her where we explain her bones are disappearing. That’s a pretty heavy thing to drop on anybody," Hosea says. "The best part right now is that she doesn’t seem to be in pain, or not very often. Some of the kids, the families we talk to, their kids are just in constant pain and we’re just praying that that is never the case for her, even if she ends up with deformities and loss of the use of her limbs, as long as she’s not in pain, because pain is such a tough thing to manage."
Hosea says that while Sophie is doing well now, they don't want people to take the disorder lightly.
"I don’t want people to see pictures of her playing and think, ‘That doesn’t look bad, she’s holding an ice cream cone in that picture,' because she’s probably not going to be holding an ice cream cone in a year from now. That’s what so sad for Lauren and I," he says. "We want people to know she’s this amazing little girl and we want to keep her healthy, that’s our goal ... We don’t want to wait until she can’t walk to ask for help."
The auction will take place all day on Aug. 15 until 11 p.m. ET. The bidding site can be found here.