Dad Is in Race Against Time to Save Teen Son and Thousands of Other Kids with Same Rare Brain Tumor

Fernando Goldsztein, an entrepreneur in Brazil, still remembers when life felt ordinary for him, his wife Barbara, and their two sons, Frederico and Henrique. That changed in 2015, when 9-year-old Frederico began suffering from headaches and bouts of vomiting.

At first, doctors didn’t find anything seriously wrong. But when Frederico developed double vision, the family finally got an answer: he had a malignant brain tumor called medulloblastoma.

“It’s very hard to put in words,” Fernando says. “We were terrified with the diagnosis. It’s kind of like the watch stopped and our lives froze, and then everything started from there.”

Medulloblastoma is rare, but it remains one of the most common childhood brain cancers. About 500 children are diagnosed with it each year, according to estimates published in the Journal of Clinical Neuroscience, and it accounts for roughly 20% of all childhood brain tumors.

Fernando couldn’t accept that families facing the disease had so few options. In 2021, he launched the Medulloblastoma Initiative to raise money and awareness — and to speed up the search for a cure.

“This is my purpose,” he says. “This is my motivation. That’s how I spend my time nowadays.”

After Frederico’s diagnosis, he underwent surgery and later traveled to Boston for months of radiation treatments.

“My parents told me that I had a little ball in my head and it would have to have it removed,” says Frederico, now 19. “After that, there were 30 sessions of radiation and nine rounds of chemo. There were side effects. Nausea, vomit — and I could not feel the taste of the food. It was really tough.”

Fernando says his fear never faded, but his son’s resolve stayed strong. “He faced everything with lots of courage,” he says.

The family eventually returned to Brazil, where Frederico had medical checkups every three months. But in 2019, they learned the tumor had returned — leading to more rounds of radiation and chemotherapy.

According to the American Cancer Society, medulloblastoma recurs in about 30% of children, and the five-year survival rate after recurrence is described as “close to zero,” because “with recurrence, there aren’t any other effective treatment options.”

“A relapsed medulloblastoma is equal to a death sentence,” Fernando says. “The doctors in the U.S. told us that there might be something to do like a clinical trial, but the best option would be to go back to Brazil and for Frederico to be with the people that he likes.”

Fernando, however, wasn’t ready to stop fighting.

As he spoke with more families and experts, he connected with Dr. Roger Packer, a pediatric neurologist with the Children’s National Research Institute. From those conversations, Fernando says he realized how limited progress had been in medulloblastoma treatment — and how urgently the field needed new ideas.

After Fernando made a donation to support Packer’s work, a team of leading scientists came together. Encouraged by what he saw, Fernando founded MBI to build something “bigger and faster” — and to push toward a cure “as fast as possible.”

So far, the organization has raised $13 million and coordinates 16 laboratories working toward the same goal.

Fernando says two clinical trials have also been recently approved by the FDA: one designed to attack tumors by training a patient’s own cells “to identify and destroy the cancer cells,” and another testing an mRNA vaccine intended to generate “a targeted immune response to destroy tumors.”

Frederico is not part of the new trials, Fernando says, because his health has stabilized to the point that no tumors appear on his MRI — which makes him ineligible to participate. Even so, Fernando says the family lives with constant uncertainty.

“He does not need this trial so far, but we know that his tumor will come back because it always does,” he says.

For now, Frederico’s health remains stable. After graduating from high school last year, he’s preparing to begin his freshman year of college.

Meanwhile, Fernando has stayed closely connected with families worldwide whose children are battling medulloblastoma. He says many see the organization as their best shot.

“They see us maybe as their only hope,” he says of the families he speaks with through Zoom and WhatApp. “It’s very hard, but that gives me strength to work even harder.”

“I want to save Frederico, but now, it’s much bigger than him,” he adds. “We are talking about thousands of kids, and this is the purpose of my life.”