Sara Bello: "How Do You Live with an Untreatable Disease? You Simply Don't Think About It."

When Ora Bello was three years old, she began complaining of frequent stomach pains. Her mother quickly realized these were not typical stomach aches. "She would wake up almost every night in pain," Sara Bello explains. "For four months, I visited the clinic almost every day, but the doctors found nothing. They initially thought it was a virus or maybe gluten sensitivity. They sent us for an ultrasound, but nothing dramatic was found."

One morning, when Ora's kindergarten teacher called again at eleven to report that Ora was exhausted and needed to rest, Sara decided she had had enough. She requested a referral to the emergency room and went there with Ora. In the ER, they conducted comprehensive blood tests that revealed problematic findings, followed by a CT scan that discovered a large mass in her abdomen. "We arrived at Shaare Zedek on Thursday, and by Friday we were told there was a tumor in her stomach. After Shabbat, we were advised to transfer to Hadassah, to the department then led by Professor Miki Weimtraub. A biopsy revealed it was stage 4 neuroblastoma: an advanced malignant disease with metastases in the limbs and bone marrow."

The Sky Falls

In one moment, Sara Bello, the wife of an avrech and an English teacher, discovered her life had changed completely. "It impacted everything," she recalls. "For example, I was nursing a nine-month-old baby and suddenly had to wean her and find a caregiver in order to be with Ora in the hospital."

In those first days, she asked many questions. The doctor explained it was a complex treatment protocol: many rounds of chemotherapy, surgery, radiation, and autologous bone marrow transplant. But the treatment did not go as planned. Chemotherapy wasn't effective, and it became clear that surgery was not possible for Ora. The doctors moved to radiation, which also didn't improve the situation. Ora's parents considered the possibility of surgery abroad but were told again it was too dangerous and complicated. They had no choice but to proceed to the final stage: a bone marrow transplant.

"She was very weak, and it was really depressing to see her that way, and after the transplant, the situation basically remained the same," says Bello. "We thought of asking the top specialist in New York to attempt surgery. He was willing to try, and good people donated money because the health fund only partially covered the surgery. But the day before the surgery, he informed us he was sorry, that it would not be possible to remove the entire tumor, and the right thing was simply to allow Ora to live and conduct monitoring." Hope was shattered once again.

In the years passed since, the Bello family lived in what sounds like an impossible reality. Ora is now eight years old, with a large tumor in her body, and the doctors are just monitoring it without really providing treatment. "At this stage, they think maybe the tumor in the stomach is benign, but I just received an MRI interpretation and it has grown again, and I need to talk to the doctors. We're always on alert."

Kisses from Hashem

How do you live such a reality, where the child is sick and cannot truly be treated? "You don't think about it much," says Sara definitively. "You believe. Medicine is so limited, even with all the technology, it's impossible to know for sure what's inside and what will happen tomorrow." Meanwhile, Ora is in second grade and feels great, *baruch Hashem*.

But even though Ora has returned, as much as possible, to the routine of a normal child, Sara never returned to her previous life. To start, she felt a strong need to change her profession. "Before Ora got sick, I was an English teacher. After her illness, I didn't have the patience to go back to the classrooms. I wanted an occupation that would be therapeutic and good for the soul. I remembered I previously learned to make personalized chocolate pralines and started investing in professional equipment. Initially, I did it for friends and acquaintances informally, but my pralines spread by word of mouth, and that's how I started my business. I began investing in designer boxes of pralines."

Bello discovered that working with chocolate was exactly the right aid for her coping. "Not only does creating with chocolate make me feel good, the knowledge that I am part of happy events, that I'm bringing joy to people, helps me greatly. I also found a lot of symbolism in working with bittersweet chocolate. It reminds me that many trials are bitter and challenging, but there are a lot of sweet mercies inside. Chocolate also reminds us of how you can take basic and simple raw materials and turn them into something like pralines. In life, you choose what to do with the things that fall upon you."

A year ago, Bello received an unexpected honor: she won first place in the "Eshet Chayil" competition of the Family newspaper. The competition asks women to nominate inspiring women they know, and Bello's touching story garnered the majority of the votes.

"Everyone asks what I gained from the competition. Well, I did receive a nice check, which is always welcome, but the important thing for me is that I really felt a kiss from *Hashem*. All the time, I'm trying to cope correctly with our challenge, not to fall, to be a strong and regular mom. And suddenly, I felt as if I heard a heavenly voice telling me: 'Keep going, this is the right way'..."

Winning the competition, of course, created even more resonance around Bello's story. Organizations and private individuals began contacting her to invite her to lectures. For the first time, she began responding to such invitations. "Friends have told me for a long time that I need to strengthen others," she admits. "But I always felt like I didn't have such a special life story. But after winning, when many women said how encouraged they were to hear me, I decided maybe it really was time to tell my story. I'm still in this trial, and for those who hear me – it's apparently significant, and it strengthens them even more."