Little Sophie Feder Rosenberg has her mother’s eyes, her father’s smile, and a life-threatening disease she shares with only 30 other people in the world.
She’ll turn 3 next Saturday. In addition to a FaceTime party, her parents are planning a fundraiser that could save her life.
Sophie is silly, curious, sharp, loving, helpful and obsessed with everything food. (Dad is “Top Chef” Season 5 winner and Blackbelly and Santo restaurant chef/owner Hosea Rosenberg, so she comes by that honestly.) The pint-sized carb lover loves to pull up her step-stool to the kitchen counter and help dad mix up bread dough, cupcakes, cookies. And salt. The kid loves her some salt.
“For some reason, she’s fascinated by salt. So she’ll take handfuls of salt and put them on different plates, and she’ll bring them to you and say, ‘Here’s some salt, daddy!’ ” Hosea said.
Hosea and his wife, Lauren Feder Rosenberg, didn’t have a clue that Sophie’s problems — slow to walk, a little wobbly on her feet — were so severe. It wasn’t until early March, at just about the exact same time they had to shut down the dining rooms at Blackbelly and Santo due to the novel coronavirus, that they learned Sophie has a crippling, life-threatening disease with no treatment, no cure.
The ultra-rare genetic disorder is called Multicentric Carpotarsal Osteolysis, or MCTO. Just 30 people in the world have been diagnosed with the painful, progressively crippling and potentially life-threatening disease. What MCTO has already done to Sophie and what it will continue to do is destroy the joints and bones in her feet and wrists. They’ll just go away. If nothing is done, she will lose the use of her hands and feet.
The life-threatening part is that MCTO is almost always accompanied by kidney failure, which doctors say could happen to Sophie at some point during childhood. While there is the potential for a kidney transplant, right now the deterioration of her joints and bones can’t be stopped.
Because it’s so rare, the disease hasn’t gotten much attention or research. Pharmaceutical companies have no financial incentive to treat or cure it.
“To say it’s been a hard time for Hosea and me is an understatement,” Lauren said. “It’s definitely been an unimaginable experience, nothing we could have ever prepared for.”
By 15 months old, Sophie had hit most of the major childhood milestones, except for walking. Her pediatrician suggested several procedures to figure out why Sophie was fighting against standing and walking — lab work, X-rays, genetic testing, physical therapy, and a visit to an orthopedist. The X-rays showed that her ankle joints were inflamed and that one of the major bones in her feet was underdeveloped. The orthopedist was perplexed, so recommended Sophie see a rheumatologist.
She was diagnosed with juvenile arthritis and put on medications and into physical therapy. It seemed to be working: With the help of orthotics that went up the back of her legs, Sophie was finally able to walk by herself, exactly a week before her second birthday.
“It was amazing, it was just incredible,” Lauren said of those first steps. “The inflammation seemed to be going away, she was getting stronger walking and didn’t need braces at a certain point.”
Meanwhile, based on the pediatrician’s initial recommendations, they’d been waiting almost a year to see a geneticist at Children’s Hospital. In January, Sophie underwent more extensive genetic testing. (Luckily, their insurance covered the costly analysis.)
Two months later, they got the diagnosis. Sophie never had arthritis; she had MCTO.
“We were just stunned. She’d been doing really well on arthritis treatments, even running around,” Lauren said.
Understanding the dire implications of the new disease was very difficult for the couple to accept. “None of that computed for us. Nothing made sense. Especially since she’s been happy and seemingly pain-free. We thought she was doing amazing.”
Since then, there have been a lot of tears and not much sleep for Hosea and Lauren, who scrambled to learn everything they could to help improve their daughter’s quality of life, and potentially save her life.
They started a nonprofit to raise money for the development of a treatment, therapy or cure for MCTO. Sophie’s Neighborhood hopes to raise $2 million this year, a number they came to by talking to experts and others who’ve advocated for the research of rare diseases. That’s the amount they’ll need to call attention to the disease and get dedicated researchers on it.
“It’s been a pretty eye-opening experience realizing how much a family has to do themselves in order to get treatment for a life-threatening disease for their child,” Lauren said.
Their first fundraiser is a nationwide virtual silent auction on May 30, Sophie’s third birthday. You can bid on cool experiences like a virtual meet-up with Super Bowl champ Emmanuel Sanders, a private dinner at your home with Carrie Baird, virtual one-on-one cooking classes with “Top Chef” contestants (including Hosea), and a video chat with Gail Simmons.
In spite of its own financial struggles right now, the local restaurant community has rallied around the family, offering financial help and more fundraisers. Gelato Boy created an ice cream flavor for Sophie, and the profits go to Sophie’s Neighborhood. Fortuna Chocolate did a special chef series to benefit the nonprofit. Kevin Morrison of Tacos Tequila Whiskey is donating liquor locker rental proceeds, and Alex Seidel is giving 10 percent of May 30 sales from his Fruition and Mercantile restaurants to the cause.
“We’ve been blown away,” Lauren said. “Everyone in the restaurant community is going through hell with their own businesses, but the response from literally everyone in our community here (in Boulder), in Denver and beyond has been people telling us they will do whatever we need.”
“At first I thought I’d be embarrassed” to ask for help, Hosea said. “But I’m fighting for my kid. People have jumped at this — people who are fighting for their own livelihoods, their own restaurants. It really warms your heart …. More than anything, we want to amplify our message. I’ve never been one to ask for help, but this isn’t something I can figure out. I need someone to help.”
The next step for Sophie is a visit to St. Louis’s Shriner’s Hospital for Children in August. Shriner’s has seen the most MCTO patients and has been doing research for years, but it’s still nowhere near the point of treating or curing the disease.
“In order to encourage a focus on this disease, we need to direct funding in their direction to work on it,” Lauren said.
They hope that Sophie’s evaluation at Shriner’s will open up more treatment possibilities and connect them with others living with MCTO.
“I think if we expose her to more and more of these kids, she’ll know she’s not alone,” Hosea said. “She has her own path in life and she’ll have to face it, but she’s not alone.”
Right now, Sophie is still wobbly on her feet. She wears braces on her wrists and feet every night when she sleeps and orthotic inserts in her shoes during the days. She’s already worse at holding a crayon now than she was just a few months ago. She’ll have to have lab tests every three months to monitor her kidneys because the decline can happen quickly. She gets injections every week to stave off pain and inflammation, and she can’t hop or jump or go upstairs without help. She takes a lot of tumbles.
“It’s normal for a three-year-old to fall a lot, but it’s hard because we know it’s not going to get better for her. It’s going to get worse,” Lauren said.
“She’s starting to notice she can’t do what other kids her size can do,” Hosea said. “It’s really sad for all of us. We have to explain this to her, but she’s too young to comprehend. She has to understand that she has to be a little stronger than people around her because she has to deal with things other people don’t.”
On Saturday, May 30, while Sophie’s parents are organizing FaceTime calls with family, monitoring the online auction, hemorrhaging their energy to bring attention to this disease and desperately trying to get a treatment or cure researched, Sophie will be blissfully diving into a confetti cake smothered by sprinkles.
As she blows out her candles, those eyes that she shares with her mother will shine and she’ll flash her father’s smile, and maybe, knowing so many people around Colorado and beyond are supporting them, that little family will share some joy.
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