Bernardo

Bernardo Oscar was a beautiful child, full of energy. He was born in April 2020.

In 2024, we began noticing the first symptoms — less energy, pain in the back of his neck, and distorted vision. Then, in 2025, he started experiencing morning vomiting and problems with balance. These symptoms led us to consult several specialists: an ophthalmologist, an orthopedist, a gastroenterologist, an ear, nose, and throat specialist, and finally, a pediatric neurologist.

Bernardo was diagnosed on December 3, 2025. He underwent surgery to place a ventriculoperitoneal (VP) shunt on December 5, followed by surgery to completely remove the tumor on December 11. He had no complications or lasting effects from the surgery. Everything was going very well.

He began radiation therapy on March 5, 2026, 84 days after his last surgery. Chemotherapy started on January 30, 2026.

Bernardo passed away on June 4, 2026, following a severe lung infection (pneumocystis pneumonia) during a period of treatment-related immunosuppression.

From the first signs of respiratory symptoms, we informed his medical team, but no preventive medication had been prescribed for this infection. Bernardo had G6PD deficiency, a genetic condition that limited his ability to take Bactrim. When doctors suspected pneumocystis pneumonia, he was treated with pentamidine and initially showed some improvement, but his condition was already very serious. To this day, we do not understand why preventive treatment was not prescribed.

The tumor was the size of a tangerine and was classified as belonging to the SHH molecular subgroup, with a cell proliferation index (Ki-67) of 40% to 50%.

We now understand how difficult this disease is and how urgently less toxic treatments are needed. That is why we believe so strongly in the work of the Medulloblastoma Initiative (MBI).

May God bless and guide everyone involved in this initiative.

Erick, Bernardo's father