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Elizabeth González, a 27-year-old Cuban mother residing in Villa Clara, has made a desperate plea on social media seeking humanitarian aid for her two-year-old son, Lucian Roger Alba González.
The child suffers from progressive familial intrahepatic cholestasis, a rare condition that makes him the only reported case in Cuba with this disease, González reported through Nelson Álvarez's profile on Facebook.
Lucian needs a liver transplant, a procedure that is currently not performed in the country due to a lack of resources.
The baby was born in Sancti Spíritus on September 10, 2022, without apparent complications, but since then he has faced a long and complicated medical history.
According to González, his son was diagnosed with progressive familial intrahepatic cholestasis, as well as chronic malnutrition and thymic hypoplasia.
Throughout his short life, he has been hospitalized numerous times due to respiratory infections, myocarditis, diarrhea with metabolic acidosis, and other health issues associated with his illness.
After multiple tests and treatments at hospitals in Villa Clara and Havana, the doctors have managed to stabilize his condition with medications such as cholestyramine and several vitamins, although these do not cure the disease.
According to specialists at William Soler Hospital, a liver transplant is the only definitive solution, but Cuba currently lacks the necessary resources to perform this procedure.
The mother recounts that her son also requires constant blood transfusions due to low hemoglobin and faces asthmatic episodes. This situation prompts her to seek support for obtaining a humanitarian visa that would allow Lucian to undergo surgery abroad, where he can receive the treatment he needs.
"The boy has to travel to Havana every three months. Right now, his liver is enlarged by four centimeters beyond its normal size, his bilirubin levels are consistently high, and very rarely does he have a normal coloration," the distraught woman emphasized.
"Medications only stabilize your condition, but they do not cure it. You urgently need the transplant, and I don't want to see you deteriorate further," González stated.
The precariousness of the public healthcare system in Cuba leads to many parents of children with rare diseases turning to social media for support to obtain treatment abroad through humanitarian visas.
In November, Cuban bureaucracy halted another life project: Cristopher Olivera Santos, the orphaned boy from Bayamo, lost his humanitarian visa because the regime took too long to process the legal custody in favor of his grandmother, and the visa expired.
The five-year-old has been waiting for some time for surgery to repair the internal damage he suffered from ingesting acid. Due to that incident, he is fed through a tube.
A desperate Cuban mother concerned about her son's health sought help last August to obtain a humanitarian visa that would allow him to travel to the United States for treatment.
Arlety Llerena Martínez went to CiberCuba to present the case of her seven-year-old son Jorge Esteban Reina Llerena, who was diagnosed with acute lymphoid leukemia when he was one year and nine months old.
Frequently Asked Questions About the Health Situation in Cuba and the Search for Humanitarian Assistance
Why does Elizabeth González ask for humanitarian aid for her son Lucian?
Elizabeth González is seeking humanitarian aid for her son Lucian, who suffers from malignant familial intrahepatic cholestasis, a rare disease that requires a liver transplant. Cuba lacks the resources to perform this operation, which is why the mother is in search of a humanitarian visa to allow her son to receive treatment abroad.
What challenges does the Cuban healthcare system face in treating rare diseases?
The Cuban healthcare system faces a lack of resources, supplies, and specialized personnel, which hinders the care for rare diseases. Cases like that of Lucian Roger Alba González highlight the need for treatments abroad due to the inability to perform complex procedures such as transplants on the island.
What other cases of Cuban children require medical treatment abroad?
There are several cases of Cuban children who need medical treatments abroad, such as Jorge Esteban Reina Llerena, diagnosed with acute lymphoid leukemia, who needs a bone marrow transplant, and Yoslany Herrera López, who suffers from cystic fibrosis and requires advanced therapies that are not available in Cuba.
How do the economic and political situation in Cuba affect patient healthcare?
The lack of financial resources and bureaucracy in Cuba severely impacts healthcare, especially for complex diseases. This results in shortages of medications, medical equipment, and specialized staff, forcing families to seek international assistance for appropriate treatments.
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