“There are no words to describe so much pain,” said activist Diasniurka Salcedo Verdecia upon breaking the news.
14ymedio, Havana, 5 April 2025 — The Cuban boy Damir Ortiz, who arrived in the U.S. for treatment for a serious illness, died this Saturday in Miami. After several days of apparent improvement, doctors certified his death at 5:00 a.m., according to family and friends.
“There are no words to describe such pain,” said activist Diasniurka Salcedo Verdecia, who, along with doctors and Cuban exiles, arranged the trip that brought the boy and his mother, Eliannis Ramírez, to Florida after a tense dispute with Cuban authorities to facilitate their departure from the country. The goal: to treat his plexiform fibromatosis type 1, caused by a genetic mutation that led to the development of tumors throughout his body.
Since then, both the boy’s family and the Cuban Health Department have discussed Damir’s progress, the degree of responsibility of both parties in his situation, and the political impact of his case, one of the most mobilizing efforts on and off the island.
“Unfortunately it wasn’t to be,” said Yamilka Lafita, also an activist, concerned about the child’s health.
“Unfortunately, it wasn’t to be,” said Yamilka Lafita, another activist, concerned about the child’s health. “Despite fighting a formidable battle against tyranny to save yet another child, at least in his final days he received quality care, the love and affection of a Cuban community that was there for him constantly. The enormous support given to this mother also demonstrated that we are a people who fight to the bitter end.”
Thousands of people have left messages of condolence for the family at the bottom of the announcement. Last week, Ramírez, Salcedo, and others familiar with the case held a press conference in Miami to refute the government’s version of events regarding the patient’s progress.
The doctors’ statements—whom Ramírez accused of giving him a “false diagnosis”—have been followed in recent days by a wave of comments and criticism from government spokespeople. The most recent attack, by Cuban TV’s Mesa Redonda [Round Table] host Arleen Rodríguez , compared the impact of the case to that of Elián González, the child—now a deputy for the regime—for whom Fidel Castro waged an ideological and legal battle until achieving his return to the island in 2000.
What was at stake when talking about Damir, Rodríguez argued, was “the prestige of Cuban medical personnel and the country’s health system.”
What was at stake when talking about Damir, Rodríguez argued, was “the prestige of Cuban medical personnel and the country’s health system,” which the boy’s family had called into question. The spokesperson also criticized the press conference, organized by “people who have lived off the counterrevolutionary industry”— an allusion to the politician Orlando Gutiérrez Boronat — who had not donated “a single cent to fundraising” to pay for the boy’s treatment.
At the press conference, Ramírez said the boy was improving and receiving adequate treatment, which he could never have received in Cuba. He did not provide any diagnosis from the medical professionals who treated him in Florida other than the child’s genetic disease, which had irreversible effects on his body.
At that time, she also responded to another accusation: that the child’s condition had worsened because she had refused to authorize a biopsy for Damir at the Juan Manuel Márquez Pediatric Hospital in Havana, thus delaying his treatment. “I had sufficient reasons and motives not to allow them to do that biopsy,” she said. However, she clarified, when Damir was transferred to the Institute of Neurology and Neurosurgery, she did authorize the test.
Reactions to the boy’s death have been manifold. The grief, after weeks of fighting for the child’s health, remains with those who followed the case and are now expressing their grief in messages like this one, from doctor Alexander Figueredo: “Damir did not die. Damir was killed by the negligence of a system.”
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