Known on social media as Noly Black, Cuban activist Norge Ernesto Díaz Blak has once again turned to his followers for financial aid, aiming to secure a home for a low-income mother living with her sick child in Holguín. In a remarkable display of solidarity, the activist highlighted the subhuman living conditions of the Holguín mother and her seven-year-old son, who suffers from a congenital condition known as agenesis of the corpus callosum (ACC).
The goal of this initiative is to gather the necessary funds to purchase a suitable home for the family, who currently reside in a makeshift shelter made of wood and metal sheets, without electricity, and far from urban centers and hospitals crucial for the child's rehabilitation. The family also faces a severe food shortage.
Thanks to the growing support from compassionate members of Cuban civil society, the campaign has raised 556,262 Cuban pesos (CUP) so far, according to a Facebook post by the activist.
"My child has muscle atrophy and needs regular rehabilitation. Currently, his allergies are exacerbated, which prevents me from taking him for his treatments," the mother explained in a heartfelt video shared by Noly Black. In this video, she exposed the dire situation faced by this impoverished family.
The child, who is also affected by cerebral palsy, epilepsy, allergies, and asthma, has been underweight since he was two and a half months old; now seven years old, he weighs only 12.5 kilograms, significantly below the third percentile, as explained by his mother.
In their sweltering home with a roof of metal and fiber cement sheets, surrounded by mosquitoes and lacking electricity or special diets (the child's milk ration was cut off from the basic food basket when he turned seven), the mother and child struggle to survive, neglected by social services that claimed no one would be abandoned under their economic reforms.
"I push my son in his wheelchair to the pediatric hospital for his rehabilitation and then back home. It's about eight kilometers round trip. To be honest, it's far and difficult, but I do whatever is necessary for his health to improve," expressed the mother.
For five and a half years, she has awaited action from housing authorities who promised to address her situation. Despite receiving a small pension and a "special diet," she reported that these are insufficient to meet even a fraction of their basic needs.
"Since May 20, we've been without power, and the mosquitoes are unbearable. The boy, Leonard Alejandro, is nearly eight (born February 28) but weighs as much as a child of two to three years," Noly Black stated, urging his followers to assist a mother and son surviving in a Cuba where inequality and social exclusion are rampant due to economic policies and partial dollarization under Miguel Díaz-Canel's regime.
Digital Activism Against Poverty and Exclusion
Recently, a group led by Noly Black successfully raised funds to purchase a home for another impoverished mother in Banes, Holguín. Valued at 200,000 Cuban pesos, the house was given to a young mother whose daughter suffers from microcephaly, cerebral palsy, and seizures. This family had been living in extremely dire conditions, lacking basic amenities.
The recipient expressed profound gratitude for the act of solidarity, which significantly transformed her life. Noly Black, renowned for his humanitarian efforts in Holguín, continues to aid those in dire poverty, in a context where recent reports indicate that 89% of Cuban families live in extreme poverty.
Understanding Agenesis of the Corpus Callosum (ACC)
ACC is a congenital defect characterized by the partial or complete absence of the structure connecting the brain's hemispheres. According to the U.S. National Institutes of Health (NIH), it may occur in isolation or with other malformations like Dandy-Walker or Arnold-Chiari syndromes.
Symptoms range from normal intelligence to severe intellectual disability, seizures, or spasticity, with potential causes including genetic factors, prenatal infections, and toxic metabolic conditions. Treatment focuses on managing specific symptoms, such as developmental issues or seizures, through multidisciplinary medical teams. Early and structured interventions, along with family support, are essential to maximizing patient potential.
Questions About Support and Treatment for ACC in Cuba
What is being done to help families with ACC in Cuba?
Activists like Noly Black are raising funds to provide better living conditions for families affected by ACC, as state support is often insufficient.
How does ACC affect a child's development?
ACC can impact a child's cognitive and physical development, with symptoms ranging from mild to severe intellectual disabilities, seizures, and motor challenges.
What challenges do families face when dealing with ACC in Cuba?
Families in Cuba face significant challenges, including lack of access to necessary medical care, inadequate housing, food shortages, and insufficient government support.