No illness is pleasant. Even less so one in which you see a person fight with all their strength, struggling as they fade before the eyes of those around them. This is the fight against cancer. The battle against childhood cancer has been a challenge for many years. For some, it is curable, but a high number of diagnosed children die from factors that could be prevented.
The María José Foundation
The María José Foundation was born from a deeply personal reason: a battle between life and death that was lost too soon. A fight that tragically ended with María José’s life at a very young age. Her struggle was marked by the pain of illness and the helplessness faced with shortcomings in the treatment provided.
These shortcomings were reflected in the management of treatment at home or day-to-day with special care, as well as shared experiences with other parents.
It must be said, María José was supported by excellent doctors, legal assistance, psychologists, nutritionists, and family. What was missing was guidance from an entity that could direct parents through the treatment process.
The foundation’s mission is to remove barriers for children diagnosed with onco-hematological conditions, regardless of their place of origin, treatment institution, socioeconomic level, or age under 18.
Solkes: Why was the Foundation created?
F.M.J: The María José Foundation was born from the experience of the Saavedra Bello family during the diagnosis and fight for life of their little María José, who passed away at 28 months old. Yipsel Bello, mother of this brave little girl, inspired by this experience, created the Foundation to provide children and adolescents diagnosed with cancer with services and support complementary to medical treatment, which in many cases improves adherence and survival outcomes.
A Health System in Crisis
Unfortunately, the Colombian health system is in crisis. Its economic-based insurance model forces patients to endure delays (due to the high cost of treatments) and denials of various health services imposed by administrators. In February 2015, the Ombudsman’s Office revealed that 60% of children with cancer die due to lack of medical attention.
Currently, childhood cancer is considered a curable disease, and its treatment has been one of modern medicine’s milestones. However, shortages of medications and delayed care contribute to higher mortality. It’s unacceptable.
Solkes: What problems do children diagnosed with cancer face in Colombia?
F.M.J: The main problem for a child diagnosed with cancer is access to healthcare under conditions of timeliness, accessibility, affordability, comprehensiveness, and quality as guaranteed by Law 1388.
The Childhood Cancer Law
It was hard to believe, but Colombia has a Childhood Cancer Law.
Solkes: What is the Childhood Cancer Law?
F.M.J: It is the law passed by the Colombian National Congress in 2010 (Law 1388) to guarantee rights and services for the healthcare of children and adolescents diagnosed with cancer, aiming to reduce the mortality rate in this population.
It regulates issues such as: databases, insurance, comprehensive care models, healthcare services, integral support, monitoring, and follow-up. This means that all children under 18 with a confirmed cancer diagnosis, at any stage or type, are entitled to all necessary services once their diagnosis is confirmed.
These services are provided by pediatric cancer units of their health insurance or territorial entity. Families also have the right to preventive treatments to ensure the child’s therapy is effective. Care includes consultations, diagnostic tests, follow-ups, medications, and surgeries—all provided in accordance with the mandatory health plan.
Solkes: How do you help these children?
F.M.J: Our goal is to complement medical treatment through social support; by raising awareness, educating, and guiding caregivers, families, society, and the state. We aim to improve the quality of life for children diagnosed with cancer, especially the most vulnerable, reducing barriers to treatment. We are the only organization in Bogotá working without exclusion, regardless of health insurance, social strata, or cancer type.
How does the Foundation operate?
The foundation pioneered Colombia’s plastic cap collection campaign to provide mobility and nutrition support, preventing treatment abandonment. They also created the “María José Doll,” a versatile toy designed to help children and caregivers understand medical, psychological, and diagnostic processes, reducing stress and ensuring better treatment adherence.
Other programs include “Plan Padrino Apapachando,” offering monthly support to beneficiaries and donors with psychological, legal, and nutritional assistance. “Proyecto Aventurero” provides mobility equipment and recreational activities for children and caregivers in specialized centers, fostering dignity, love, and social integration.
Having complete information on how to face these illnesses and survive the process with integrity is essential. With this in mind, they established the only Latin American National Congress on Childhood Cancer for caregivers.
Solkes: Do you support only the sick children or their families as well?
F.M.J: Our social support services are for both children diagnosed with cancer and their families. Psychological support and recreational activities include family participation.
Solkes: What are your goals?
F.M.J: Current and future programs aim to complement medical treatment, improving adherence and ultimately increasing national childhood cancer survival rates.
Solkes: What have you achieved so far?
F.M.J: The FMJ is recognized as a local leader in childhood cancer civil organizations. Its main achievement, however, is improving the quality of life and well-being of children, who are especially grateful.
What’s left to do
Despite opening doors for children with cancer and their families, much remains. FMJ aims to become the national reference in childhood cancer and is preparing to establish a major national center for comprehensive services.
Solkes: Why is it necessary to help children in Colombia and worldwide?
F.M.J: Due to their natural vulnerability, society has a constitutional duty to protect and support children. Conditions such as illness, malnutrition, and insecurity require intervention from both state agencies and civil society to improve children’s living conditions.
Solkes: Any message for readers?
F.M.J: We often dream of a better world and think, “If it were me, I would… I would say… I would change…” But it’s not about staying in idealistic phrases—it’s about taking action from our feelings, passion, reason, and soul, starting with ourselves and extending it to family, friends, and community.
Currently, they are developing “I Am an Opportunity for Change for Children with Cancer in Colombia,” aimed at coordinating all actors involved in childhood cancer care to improve training, guidance, and reduce delays in comprehensive care.
They are also working on “Attending and Understanding Children with Cancer in Colombia,” which seeks to improve healthcare conditions through awareness, training, and commitment from institutions providing pediatric cancer care.
The Fight Continues
This initiative will start soon, expected to make a difference through a successful care model in their city.
The fight against childhood cancer depends not on a single organization, but on everyone. Sadly, many families have lost a child to this disease. True success is not measured by the changes you achieve externally, but by the changes you create from within.
