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FILE - For illustration purposes only. [File photo: AIM]
Isaac Henriques, a 19-year-old Mozambican student, dreams of living without fear of the sun, but what’s stopping him isn’t a lack of sunscreen, but rather his parents’ fear, which is hindering his treatment for his skin pigmentation.
“One day, on my way to school, I met a man who told me that on June 2nd I should go to the Nampula Central Hospital because there was a treatment campaign underway, and they would also distribute hats, sunscreen, and medicine for us albinos. I told my father, and he said everything was fine,” the young 11th-grade student at Anchilo Secondary School, 17 kilometres from the city of Nampula, northern Mozambique, told Lusa.
Isaac’s hope was short-lived, as on the day he was scheduled to go to the hospital, he was surprised by a bucket of cold water from his fearful father: “No, it’s not worth it, they’re going to take you, they’re going to rob you.”
Isaac’s father justified his refusal by citing reports of traffickers at the central hospital, a fear involving kidnapping for organ harvesting that haunts people with albinism throughout the country.
With a trembling voice, Isaac recalls that his only wish was to receive treatment, which was postponed again.
Even so, Isaac didn’t give up and sought help from an uncle, promising to pay for transportation to the hospital. This hope, too, was dashed: “My uncle also refused, afraid of my father.”
Since then, Isaac has lived in isolation, trying to hide from the sun whenever possible, which punishes his sensitive skin. “I just wanted to get better, like I see others get better after receiving treatment,” he says.
“A real war with parents”
Isaac isn’t the only one in the family experiencing this reality. His two younger brothers, who also suffer from albinism, face similar restrictions at home.
Márcia Bacar, deputy delegate of the Amor à Vida Association, admits that Isaac’s difficulties are similar to so many others in Nampula.
“We’re fighting a real war with parents and guardians. Many don’t allow their children with albinism to receive treatment for fear of trafficking or because of long-held beliefs. Some even keep their children at home, as if they were prisoners,” she explains.
The situation is particularly serious in districts like Moma, in Nampula province, where taboos and misinformation persist. “Even with awareness campaigns, many remain reluctant,” Márcia adds.
However, there are cases that show that it is possible to overcome fear, such as that of Patrício Jorge, an 18-year-old from Nampula, who was diagnosed with cancer.
He also faced resistance from his parents, but decided to seek help on his own. At the time, he was told his life was at risk if he wasn’t treated. For almost a month, with the help of the Spanish organization África Direto, he has been receiving treatment in Spain, according to Márcia Bacar.
For many others, hope is reborn with the second phase of the screening and treatment campaign for people with albinism, which runs from Monday until October 17th at the Nampula Central Hospital. Organized by África Direto, it plans to screen and treat more than 200 patients and also provide medication, hats, and sunscreen.
The initiative comes after 16 skin cancer diagnoses were detected during the first assessment in June. “If someone shows up and says they’re going to take me to the hospital, I’ll go. I want to live. That’s all,” Isaac says, his eyes welling up in tears as he shields his face from the sun.
People with albinism, an inherited genetic condition that results in the partial or total absence of melanin, have been victims of persecution, violence and discrimination, fuelled by myths and superstitions.
Data from the National Human Rights Commission (CNDH) from 2023 indicates that, since 2014, at least 114 people with albinism have disappeared in Mozambique in unclarified circumstances.
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