José Antonio Rojas is the father of Manuel Alejandro, a 24-year-old Cuban who was diagnosed with cystic fibrosis at four months old, a genetic, chronic, and progressive disease that primarily affects the lungs.
To clarify what it is exactly, in an interview granted to CiberCuba, Rojas explained that while most people in Cuba are focused on daily problems, his son has just one concern: "Manuel struggles to breathe. We really don’t know how much lung capacity he has left. Two years ago, it was at 30%. Now, with the demand for oxygen as he is experiencing, we believe it is well below that," he said.
"While we all live a normal life and don't realize that we breathe, they only think about how they're going to breathe, about getting that little bit of air they need," Rojas added.
From the Juan Bruno Zayas surgical hospital in Santiago de Cuba, where Manuel Alejandro Rojas has been hospitalized for 120 days (since November 2024), his father has explained to this platform that they need an antibiotic (Cefiderocol), which is used to treat complicated infections.
But in reality, the child's health is so deteriorated that what he urgently needs is a lung transplant, which is, as of today, a pipe dream, unless the process of the Law of Grandchildren is expedited at the Spanish Consulate in Havana, allowing the family to obtain citizenship and travel to Spain, where Manuel could access the quality free healthcare he needs.
José Antonio Rojas underscores the need for the families of the 260 cystic fibrosis patients in Cuba to unite, as they do, for example, in Spain, with the Federation of Cystic Fibrosis Associations, to support each other and advocate collectively for increased state investment in this illness, which, outside of Cuba, is chronic, but is complicated on the Island due to reliance on three factors: nutrition, physiotherapy, and antibiotics.
"At this moment, something as simple as pancreatic enzymes is becoming a problem because they lack the proper quality and are not sitting well with him."
Your son urgently needs antibiotics and modulators; the latter is a medication that enhances the production, intracellular processing, and function of the CFTR protein, which is defective in patients with cystic fibrosis. When this occurs, mucus is produced where bacteria adhere, impairing lung function, hence the need for antibiotics to combat these bacteria that, as Rojas states, do not understand politics or embargoes.
"It reaches a point where it is unsustainable for those little bodies to fight against the bacteria," he emphasized.
To conclude the interview with CiberCuba, José Antonio Rojas sent a message to the families of children with cystic fibrosis: "Please don't fool yourselves. Don't settle for the fact that your child is doing well now because it won't always be that way," he said.
For this reason, she believes it is essential to unite and fight together for greater state investment in the medications that the lives of 260 people with cystic fibrosis in Cuba depend on.
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