Discover the story of Carlos Daniel, a symbol of the fight against childhood cancer in Amapá

When mathematics teacher Agenilson Pereira discovered that his son Carlos Daniel, at six years old, had cancer, his entire life changed. Agenilson is from Macapá, the capital of Amapá, and had to take his youngest son to São Paulo in search of diagnosis and treatment.

The boy began to get sick and showed some signs and symptoms that were previously unknown to him and his family. “After being hospitalized a few times in Macapá, a doctor took me aside and said: ‘Look, dad, I suspect that your son has leukemia’. That opened a hole in front of my feet…”, he remembers.

Given the lack of structure and specialized professionals in the state, they had to travel to treat their cancer. “The health plan refused to transfer the air ICU, so we did everything via SUS, which sent us to Hospital Santa Marcelina, in São Paulo”, he says.

Assistance and reception

Carlos Daniel underwent treatment in São Paulo for eight months and during the time he attended the hospital, Agenilson came across other children from Amapá fighting cancer. “Most of the families were needy, very poor families, who often didn’t even have money to buy a coffee or lunch, so whenever I could, I helped them.”

One day, however, Carlos Daniel had an incident and passed away. The boy had already turned seven years old and his death generated intense commotion throughout the state. “I posted about his treatment on social media and when we returned to Macapá, Carlos’ story took on a proportion I had not even imagined. The wake was in the church court, almost 15 thousand people attended”, he says.

The next day, Agenilson met with family and friends and together they decided to create the institution. The NGO Carlos Daniel was founded on June 26, 2015, one year after the diagnosis. “It was a tribute to my son. I couldn’t abandon the other children”, he says emotionally.

Cancer in children and adolescents

Experts point out that childhood cancer occurs due to genetic reasons. Many are born with cancer, however, it is important to pay attention to the signs of the disease, as early diagnosis increases the chances of successful treatment. Among the symptoms are:

• weight loss
• fatigue
•  lack of appetite
• anemia
• constant fever, usually always starting at the same time
•  weakness in the legs
•  bone pain
• purple spots on the body
• bleeding from the mouth, nose, and ear
• swelling in the neck, armpits, and groin
• the so-called cat’s eye, when a white spot appears in the eye

For Agenilson, it is necessary to make society increasingly aware of the importance of food and water quality for the health of the population. He recalls that the state of Amapá, for example, is rich in minerals and that gold mining, in particular, ends up contaminating the waters with mercury, a highly carcinogenic substance.

“They say that the Amazon belongs to everyone, the trees, the fauna, the flora, the river… but when it comes to the ills, the diseases, the problems of the Amazon, no one wants to know, so everyone runs”, he says.

NGO Carlos Daniel

During its nine years of operation, the Carlos Daniel NGO has already impacted more than one hundred children throughout the state of Amapá, becoming a local reference in assistance and care for children with cancer.

In addition to representing the state in the Brazilian Association of Lymphoma and Leukemia (ABRALE), it actively participates in the TJCC, the largest cancer congress in the country. The NGO is also associated with the National Confederation of Support and Assistance Institutions for Children and Adolescents with Cancer in Brazil (CONIACC).

The NGO’s main activity is to guarantee scheduling for free treatment in São Paulo, in addition to reception, food, and transportation, which is essential during this phase. “If the child is well received in a support home, receiving affection and structure, this will be essential for their recovery during treatment”, points out the founder and manager.

The expectation for the future is to have its headquarters, with a medical and dental office, psychological care, toy library, cafeteria, and accommodation. “Carlos Daniel did not die, he is still alive in every child that the NGO serves”, Agenilson is proud.

Want to support this cause?

The NGO Carlos Daniel depends on donations and volunteers for its operation and has a program called “Godmothers of the NGO”, with a group of partners who make monthly donations. Spontaneous contributions can also be made via PIX: CNPJ 22.767.286/0001-78.

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