Frederico

Frederico was just 9 years old when he was diagnosed with medulloblastoma in 2015. Until then, our life had followed a normal path, like that of so many other families. I had faced cancer myself in my youth, but when it comes to your child, it is different — it feels as if time stops. Nothing truly prepares a parent to see their child go through this.

We were fortunate to be able to seek treatment at some of the best centers in the world. Our family moved to the United States so we could be there every step of the way. My wife, Bárbara, Frederico, his younger brother Henrique, and I spent many months in Washington, D.C.

During that time, what impressed me most was the way Frederico faced each stage. With calm, curiosity, courage, and a strength that cannot be taught — it is simply something you have.

At first, we believed we had won. But the disease came back. And with that blow came the certainty that giving up was not an option.

We were confronted with the fact that the standard treatment for medulloblastoma has changed very little since it was established back in the 1980s. It is a harsh protocol, not very effective, and often highly toxic.

When the disease returned, my son made a decision that we deeply respected: he wanted to stay in Brazil, at home. His treatment took place during the pandemic, which made everything even more difficult. We traveled to the United States more than 20 times, and he also participated in two clinical trials. It was a hard period, marked by isolation, uncertainty, and many difficult decisions.

Today, Frederico is 19 years old and stable. He is a bright, thoughtful, and curious young man. He is moving forward and is now in college, studying geography. Reading — which he has loved since early childhood — and, more recently, photography are his favorite ways of understanding and making sense of the world.

My son’s story is still being written, just like the stories of thousands of children and young people diagnosed with medulloblastoma — and that is why there is urgency. We cannot lose time. We need better, more effective, and less aggressive treatments for Frederico, and for every child facing this disease.

There is a phrase from the Talmud that has stayed with me throughout all these years: whoever saves one life saves the entire world. As a father, I continue to believe in that.

Fernando, Frederico’s father