A sick child’s destiny rests on a letter from the Cuban government and a US visa

Time passes and 10-year-old Damir Ortiz gets a little sicker every day. This fact is evident to the doctors who are treating him for plexiform neurofibromatosis type 1, a neurological genetic condition that has led to the appearance of tumors throughout his body. It’s evident to the Ministry of Public Health authorities and the rest of the Cuban government, but also to the officials at the U.S. embassy in Havana, where the young boy with a diminutive physique, a right eye so swollen it looks ready to pop, and very little strength left presented himself. He had come to request a visa that would allow him to travel for treatment at Miami’s Nicklaus Children’s Hospital.

But authorities turned Damir down. The told him to leave and come back with the necessary documentation: a precisely composed letter of at least two pages, written on a computer and not by hand, in which the Cuban Ministry of Public Health recognized that it could not provide the necessary treatment to guarantee the child’s health. Every day he spends waiting for a resolution from his government and the U.S. embassy, Damir gets a little sicker.

Mike Hammer, chief of mission at the U.S. embassy, has firsthand knowledge of Damir’s situation, having been informed of it by members of the opposition to the current government, with whom he maintains a busy schedule of meetings. U.S. Congress representative Maria Elvira Salazar is also aware, and has asked for help getting Damir out of Cuba. She once inquired on social media, “How much longer will they play with Cubans as if they were pawns?” But for now, nobody is doing anything about the boy’s case. Time passes and Damir gets sicker.

The child’s latest medical report, issued Monday morning by Dr. Miguel Ángel Ruano, states that Damir had a calm night, ate “what he likes” for breakfast and is fever-free, lively, and communicative. The doctor attends him via telehealth appointments from Colombia, and keeps Damir’s thousands of concerned followers informed on every detail of his condition. The boy is under treatment at Havana’s more-than-60-year-old Neurology and Neuroscience Institute where, according to Damir’s mother Eliannis Ramírez, he is receiving “first-class care.”

In contrast, when he was a patient at the Juan Manuel Márquez Pediatric Hospital, Damir’s mother had to go out to search for syringes and bandages, changing them herself, in addition to tracking down his medication. After being transferred to the new facility, Ramírez says that Damir has a mini-bar in his private room, television with international channels, hot food, dedicated and attentive nurses, plus easy access to the medicine he needs to keep his pain under control and soothe his dried-out eyes. His mother, who was used to having to get her hands on his medicine to the best of her own abilities, buying it on the street or receiving it from friends abroad, was told by the new doctors that there was no need for such measures, that they had all he needed in the hospital.

Damir, who at 10 years of age has the eloquence of one who has lived through it all, says that he’s currently at the hospital waiting for an airplane that he will board and will take him out of the country. The facility in which he is currently receiving treatment seems light years away from those in the photos that have been coming out of Cuba for years, showing unsanitary, dilapidated hospitals lacking the supplies needed to support their patients’ recovery. That being said, the child is currently in the International Medical Care ward, typically reserved for foreigners who can afford more costly care.

A mother’s struggle amid political disputes

The little boy was transferred to his current hospital after his mother declared war on the Ministry of Health. She is not the only parent to have challenged the system or fought for better care for their children, but she did manage to achieve results when authorities attempted to diffuse the situation by transferring Damir, in the custody of State Security forces, to a well-equipped hospital, after he became the latest Cuban child at the center of a political furor. His face has appeared on state-sponsored Cuban and Miami news shows alike, the former presenting him as a tool of foreign “propaganda” and the latter, a victim of the ills of Castroism. Cuban medical authorities say they’ve done all they can for him. Florida politicians claim that their self-proclaimed “medical power” is incapable of curing him.

Damir has had NF1 nearly his entire life and doctors are also testing him for leukemia. Ten years of partial diagnosis and the lack of the medicine he requires have led to the deterioration of his body. Since October, his mother has warned that Damir’s condition is getting worse by the day. Ramírez has tried nearly everything. She and a group of mothers gathered in front of the Ministry of Public Health headquarters, sick of their demands for his health being ignored. She presented Damir’s case to UNICEF, hoping for a statement to be issued on the impossibility of his receiving proper treatment on the island. “My son’s illness is chronic and in Cuba, there are no alternatives for surgery or treatment for him,” the mother told EL PAÍS on that occasion. “I have asked for help everywhere and nobody cares. I am desperate, distressed, sometimes depressed, lacking strength, because everything in this country is in vain.”

He’s doing even worse now. His legs are subject to paralysis and barely respond to his commands. His right eye has swollen to nearly the size of a ping-pong ball. Damir has a tumor, its exact diagnosis unknown, infiltrating his spinal cord. Left with no other option, his mother picked up her cell phone and turned the Juan Manuel Márquez hospital ward into her battlefield, a kind of fort in which she could barricade herself with her son, where she livestreamed his fight against the Cuban health system.

Recently, Damir woke up screaming that he couldn’t see. He’d gone completely blind. He can’t see cartoons, watch videos on the phone. He can’t see his mother, which has led him to fiercely grip her hand, asking her not to let go. Ramírez tries to keep his spirits high, as she has since he was born. In one of the videos the mother shared on social media, Damir interrogates her. “What will I do when my legs are cured and I want to get up and I can’t see where I’m going?” Ramírez says that, unable to see the world around him, her boy will pass time by singing.

A week later, his mother set about organizing a $40,000 fundraising campaign for a humanitarian visa to go to Miami, after the boy was approved for treatment at the Nicklaus Children’s Hospital. At this time, she has raised more than $30,000. But the Cuban government does not seem ready to give in, much less admit that the state-run health system lacks the resources that Damir would find in southern Florida.

The state is so adamant on this point that it has invested energy into calling the merits of Damir’s case into question, saying that his situation has less to do with any fault of the government as much as being a campaign targeting the Cuban system itself. Havana’s director of health, Dr. Manuel Rivero Abella, said that Cuba is providing Damir with “the first-class treatment he needs.” The director of pediatrics at Juan Manuel Márquez believes those who have joined the outcry on social media “are trying to manipulate the reality of the care” the boy has received. The government even distributed a video in which several families of children with cancer state they have “no complaint” regarding the hospital in which Damir was being treated.

The state’s war with Ramírez recently escalated. The hospital has been refusing for some time to provide the mother with the letter she needs to apply for his visa. Wearing their white coats and speaking into a microphone, some of Ortiz’s doctors appeared on television claiming that signing such a letter would be tantamount to “telling a lie” and “discrediting a system that does have the capacity to attend to the clinical elements that arise from this disease.”

Hospital authorities declined to provide the boy with an ambulance to get to his February 6 visa appointment at the U.S. embassy. When his mother still managed to get one, police arrested its paramedics and by some accounts, had them fired. Ultimately, Ramírez brought her son to the embassy in a taxi, only to have officials send him back to the hospital. There will be no visa for Damir without exact documentation, with clear statements — even when the proof of his own blind, pained, weak, cramping body exists.

Late on Monday afternoon, Dr. Ruano told the thousands of followers of Damir’s case, the individuals whose donations fund his care cent by cent, that he’ll be receiving a transfusion of blood cells and platelets. He is stable. And although the doctor’s words bring a certain degree of relief to those who have been watching over the child from afar, it’s clear that as time goes by, Damir Ortiz is getting a little sicker every day.

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