Discover the initiative created by Fernando after the recurrence of Frederico’s cancer, diagnosed at age 9, which currently connects 16 international laboratories
A story of courage and scientific mobilization began in 2015, when Frederico, at 9 years old, was diagnosed with medulloblastoma, a rare and aggressive malignant brain tumor.
From that moment, parents Bárbara and Fernando faced a long routine of surgeries, chemotherapy, and radiotherapy. Even during the most difficult times, the boy’s smile remained present in the photographs taken by the family.
Frederico underwent his first surgery in Porto Alegre. Subsequently, chemotherapy and radiotherapy were performed in the United States.
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The treatment initially managed to control the disease. However, some time later, the tumor returned, requiring another surgery and new rounds of medical procedures.
Faced with the recurrence and an unfavorable prognosis, Fernando decided to seek international specialists. This search led to an initiative that currently brings together 28 scientists dedicated to developing treatments against medulloblastoma.
Understand the medulloblastoma faced by Frederico
Medulloblastoma is a fast-growing malignant tumor that usually develops in the cerebellum, located at the back of the brain.
This region is involved in controlling balance, motor coordination, and other fundamental functions. Additionally, the cancer can spread to other parts of the central nervous system.
As explained by a doctor from the Support Group for Adolescents and Children with Cancer, GRAACC, the traditional protocol still manages to cure many children.
However, the treatment is considered one of the most aggressive. The combination involves surgery, chemotherapy, and radiotherapy applied to the patient’s skull and spine.
The consequences may include hormonal changes, growth problems, learning difficulties, hearing loss, visual disturbances, and thyroid impairment.
Fernando was not satisfied with the aggressiveness of these procedures. For him, current technological advances contrasted with a protocol that had been used for approximately 40 years.
How the Recurrence of the Tumor Led to an International Initiative
When the medulloblastoma returned, Fernando was informed that the treatment options were limited. Still, he refused to give up on his son.
The family began talking to doctors and researchers until they found Roger Packer, a specialist at the Children’s National Hospital in Washington, United States.
During the meeting, Fernando asked what could be done to transform the treatment of the disease in time to help Frederico and other children.
The specialist explained that it would be necessary to bring together the best laboratories dedicated to medulloblastoma. Moreover, these teams would need to collaborate, share information, and abandon the logic of scientific competition.
Following this guidance, Fernando invested his own resources in creating MBI, an international initiative aimed at combating medulloblastoma.
Currently, the project brings together 28 scientists and 16 laboratories located in the United States, Canada, and Germany. The initiative also receives donations to support the research.
New Therapies Are Already Being Tested in Children
In four years of joint work, the researchers managed to bring two experimental treatments to studies authorized by the FDA, the United States regulatory agency.
One of the approaches uses the body’s own cells to attack the tumor. The other employs tumor cells to reprogram the patient’s immune system.
The scientists also analyze the genetic characteristics of each cancer. In this way, they seek to target only the tumor cells, preserving healthy tissues and, most importantly, the brain.
The therapies are still in the experimental phase and do not guarantee a cure. However, the researchers hope to create more effective treatments with fewer severe and permanent side effects.
The procedures have started being tested in children in the United States. As presented in the report, the first results were expected approximately a year and a half later.
Research may benefit Brazilian patients
In Brazil, scientists from the Albert Einstein Israelite Hospital in São Paulo are expected to receive the results of research conducted abroad.
This cooperation may allow clinical studies to arrive in the country. Consequently, Brazilian children may benefit in the future from the discoveries funded by the initiative.
Frederico is currently 19 years old, showing no signs of the tumor and undergoing preventive treatment. Since the disease is not active, he cannot participate in the new experimental therapies.
The young man studies, enjoys reading, and captures photographs of nature with his cell phone camera. Meanwhile, Fernando maintains confidence in science and continues to seek alternatives for his son and other families.
Thus, a family experience marked by fear transformed into an international scientific network. The mission is summarized by a phrase repeated by Fernando: “He who saves a child saves the world.”
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