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‘Hard to imagine it’s going to get worse’ The week the coronavirus shut down their restaurants, Blackbelly’s

Hosea and Lauren Feder Rosenberg found out their 2-year-old daughter had a rare genetic disorder. Now, they need your help. by Matt Cortina

When Sophie Feder Rosenberg was supposed to start walking, at around 18 months old, she didn’t want to. It seemed like she was in pain. So her parents, Blackbelly/ Santo owner and chef Hosea Rosenberg and Lauren Feder Rosenberg, took her to the children’s hospital. After months of tests and examinations, the diagnosis came back: juvenile arthritis.

“We started treating that with medications and physical therapy and a special brace,” Lauren says. “Just shy of her second birthday, she was walking all by herself without pain. Everything seemed to be feeling a lot better.”

But there were still some anomalies that first diagnosis didn’t address. Some of Sophie’s bones were underdeveloped, and there was inflammation in her ankles. So a doctor recommended that Sophie undergo whole exome sequencing, the most extensive genetic test available.

As they spent months on a waiting list for the genetic test, Sophie continued to get better. She eventually got the test at two and a half years old, and the Rosenbergs waited an excruciating two months until they got the results in March this year.

“We felt we had been making so much progress and Sophie was doing so well,” Lauren says. “But hearing she was just passing through phase 1 of a totally different disease, we were stopped in our tracks. It didn’t compute in any way.”

The diagnosis was multicentric carpotarsal osteolysis (MCTO), which presents initially as juvenile arthritis. But, in fact, it’s a rare degenerative disorder that prevents bones and joints from developing and may lead to kidney failure. Only 30 people in the world have been diagnosed with it. No cure or treatment exists today.

The Rosenbergs got the diagnosis the same week restaurants — their livelihood — shut down due to the coronavirus.

“We stayed in our car and cried because we were supposed to be in the restaurant for a meeting and all this other shit was happening in the world, and it didn’t feel real,” Hosea says. “It was very surreal. The way the doctor described it. It didn’t sound like it could be happening. How does the body start eating away at its own bones? It’s been very sad. It’s been very frightening. I go between being OK, and then there’s days where I feel really depressed.”

“As a parent you want to look toward the positive and the growth,” Lauren adds. “Little did we know there could be something entirely different presenting [as arthritis]. That was completely devastating and frightening.”

With no treatment or cure for MCTO available, the clock is ticking to stave off developments that could mean Sophie (who turns 3 at the end of May) loses the use of her hands, or becomes confined to a wheelchair, or needs a kidney transplant. So the Rosenbergs started Sophie’s Neighborhood, a nonprofit that’s starting almost from scratch to raise funding and connect with doctors and researchers to find a cure. The need for action is urgent.

“The longer it takes for us to start treating her, the harder it will be to make a difference,” Lauren says, adding that she could live with Sophie’s current limited range of motion MCTO has caused “if we could stop this in its tracks and put a pause on it.”

“We don’t want it to be so tragic where she’s in a wheelchair or can’t play a piano,” Hosea adds. “We see this window as closing. ... There’s these dominos that are up and if someone tips one over they start to fall, you want to stop it. The longer they fall, it may be impossible to pick them back up.

“We’re fighters,” he says. “We want to preserve what we’re experiencing.”

And what are they experiencing? Life with a daughter who has no idea that other children don’t have to wear the casts she has to or visit as many doctors as she does. A sweet kid who doesn’t have to figure out how to make SOPHIE FEDER ROSENBERG has a rare genetic disease and her parents (Hosea and Lauren) have started a nonprofit to find a cure.

money through a restaurant during a pandemic or how to stop a rare genetic disorder in its tracks. A kid, joyful and silly and free.

“Sophie is amazing,” Hosea says. “I always feel worse about her when she’s not around. When I was playing with her this morning, she kept wanting to give me this little nose nuzzle, and she was being super funny and super cute, climbing on our dog. That not only relaxes me a little bit and makes me not worry, it gives me strength. She’s not a goner. She’s here, and she’s with us.”

Hosea and Lauren can also rely on their strong marriage as well — “We’re in love still,” Hosea says, “and we support and trust each other.” And they take some solace in knowing exactly what’s affecting Sophie’s development.

“I understand that these things happen. I understand nature isn’t fair, nature doesn’t care,” Hosea says. “But at least we know. That’s the one good part of this, and we know exactly what’s happening, even though there isn’t a cure yet.”

And they can take solace in the Boulder community and the network of chefs Hosea is plugged into due to his successful restaurants and his time on Top Chef. After launching Sophie’s Neighborhood, the Rosenbergs received an outpouring of support from all over: local doctors and researchers to provide guidance; renowned chefs, like Top Chef judge Gail Simmons, who has an international reach to get the word out; and even local folks who have been in the Rosenbergs’ position before — Julia Vitarello, a Boulder woman whose daughter is also battling a rare degenerative disorder and who created a nonprofit, Mila’s Miracle Foundation, that led to her daughter getting a treatment that didn’t exist before her efforts.

It’s a long road to duplicate that success, but Lauren says they have a path forward.

“Basically you need a champion, someone who’s going to take on this specific mutation, study it, build mouse models, tests different theories. All of that requires so much funding,” she says. They were told “we should target $2 million, which is incredibly daunting. So it’s our hope and I feel confident we’re going to find that person or that group that will help us.”

There are some leads — there’s a physician’s group in St. Louis, which the Rosenbergs will visit in August, that have seen several MCTO patients — but nothing is guaranteed. One thing that is certain is that with continued doctors visits and hardships along the journey, Hosea and Lauren will have to tell her what’s going on at some point. And, understandably, they don’t know how yet.

“It’s hard to say at this stage because she’s so young how to kind of explain it to her,” Lauren says. “We have a few books that are sweet that talk about differences, one book about dogs that are different, some have three legs and some don’t have eyes and how they can still have a great life and they can kind of do anything. There are books about breathing and taking care of yourself through breath. We haven’t had the conversation that she’s going through something not everyone else is. I’m not sure how we’re going to tackle it.”

So far, Hosea says, Sophie’s taking it all in stride.

“She sees a lot of doctors,” he says. “It’s a normal part of her existence. What makes it funny is kids play all the time, they play pretend and she’s always grabbing me by the hand and saying we’re going to the doctor’s office. It’s bittersweet that that’s her experience.”

Through Sophie’s Neighborhood, the Rosenbergs are hopeful that, with the help of the community, they can find a treatment, and quickly. And, they’re determined to see it through. Their world is at stake.

“She’s such a special little girl. She’s smart and funny and has a total attitude. She thinks she knows better than you,” Hosea says. “It’s so unfair. It’s hard to imagine it’s going to get worse and that’s exactly why we’re fighting so hard. Any parent would do the same thing we’re doing. She comes before everything else in the whole world. I’d cut off my arms and legs for her.”

To learn more about Sophie’s Neighborhood, and find out how you can help, visit sophiesneighborhood.org. On May 30, Sophie’s Neighborhood will hold a silent virtual auction including virtual meet-and-greets with pro athletes, virtual cooking classes with local and Top Chef chefs, jewelry, furniture, gift baskets and more.

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How to save the economy and climate together by Kieran Cooke

The warnings are stark. With the COVID-19 crisis wreaking global havoc and the overheating atmosphere threatening far worse in the long term, especially if governments rely on the same old carbon-intensive ways, both economy and climate will sink or swim together.

“There are reasons to fear that we will leap from the COVID-19 frying pan into the climate fire,” says a new report, “Will COVID-19 fiscal recovery packages accelerate or retard progress on Climate Change?” Published by the Smith School of Enterprise and Environment at the University of Oxford, U.K., it says now is the time for governments to restructure their economies and act decisively to tackle climate change.

“The climate emergency is like the COVID-19 emergency, just in slow motion and much graver,” says the study, written by a team of economic and climate change heavyweights including Joseph Stiglitz, Cameron Hepburn and Nicholas Stern.

Economic recovery packages emerging in the coming months will have a significant impact on whether globally agreed climate goals are met, says the report.

“The recovery packages can either kill two birds with one stone — setting the global economy on a pathway to net-zero emissions — or lock us into a fossil system from which it will be nearly impossible to escape.”

The study’s authors talked to economists, finance officials and central banks around the world. They say that putting policies aimed at tackling climate change at the center of recovery plans makes economic as well as environmental sense.

“... Green projects create more jobs, deliver higher short-term returns per dollar spend and lead to increased long term-term cost saving, by comparison with traditional fiscal stimulus,” says the report.

“Examples include investment in renewable energy production, such as wind or solar. As previous research has shown, in the short term clean energy infrastructure construction is particularly labor-intensive, creating twice as many jobs per dollar as fossil fuel investments.”

COVID-19 is causing great suffering and considerable economic hardship around the world. But it has also resulted in cleaner air and waterways, a quieter environment and far less commuting to and from work, with people in developed countries doing more work from home.

The International Energy Agency (IEA) said in a recent survey that COVID-19 and other factors were bringing about a fundamental change in the global energy market, with the use of climate-changing fossil fuels falling sharply and prices of oil, coal and gas plummeting. The IEA also projected that global emissions of greenhouses gases would fall by 8% in 2020, more than any other year on record.

The Oxford report says that with the implementation of the right policies, these positive changes can be sustained: by tackling climate change, many economic and other problems will be solved.

Skeptics have often said that public resistance to changes in lifestyle will prevent governments from taking any substantial action on the climate issue. The study begs to differ:

“The (COVID-19) crisis has also demonstrated that governments can intervene decisively once the scale of an emergency is clear and public support is present.”

Economists and finance experts are calling for the U.K. to play a decisive role in ensuring that economies around the world do not return to the old, high-carbon ways but instead implement green recovery packages.

The U.K. is president and co-host of COP-26, the round of U.N. climate talks originally due to take place in November this year but now, due to the pandemic, postponed to early 2021.

The round is seen as a vital part of efforts to prevent catastrophic climate change.

Mark Carney, the former governor of the Bank of England, now a finance adviser to the British prime minister for COP-26, says the U.K. has the opportunity to bring about fundamental changes in order to combat a warming world.

“The U.K.’s global leadership in financial services provides a unique opportunity to address climate change by transforming the financial system,” he says.

“To seize it, all financial decisions need to take into account the risks from climate change and the opportunities from the transition to a net zero economy.” This story was originally published by the Climate News Network. “IN THE SHORT-TERM clean energy infrastructure construction is particularly labor-intensive, creating twice as many jobs per dollar as fossil fuel investments.”