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The life of little Yoseily Miranda Rojas, a 10-month-old baby from Camagüey, has been spent within hospital walls since she was just 20 days old.
There, in bed 11 of the Gastro room at the Eduardo Agramonte Piña Pediatric Hospital, her mother Jennifer Rojas, a 17-year-old teenager, is fighting a battle that seems too great for two such young lives.
Yoseily suffers from maple syrup urine disease, a condition so rare that currently only two children in all of Cuba have it, said internet user Marilesdy Torres in the Facebook group Baratelas Camagüey.
The uncontrollable seizures that marked the beginning of his life were a sign of a diagnosis that would completely change his fate; without the proper treatment, this disorder can be fatal.
Since then, the baby has not been able to return home. She has been hospitalized for 10 months, completely reliant on a strict diet and medications that are not available in Cuba.
He cannot consume any food that contains proteins, all dairy products have been restricted, including breast milk, and he can only be fed with a special formula called Anamix, which is practically impossible to obtain on the island.
Additionally, he needs medications such as sodium valproate, L-carnitine, biotin, and phenobarbital, essential supplies to manage the effects of the disorder, but equally scarce in the country.
The complaint was amplified by journalist José Luis Tan, who raised awareness about the seriousness of the case and the lack of resources to treat the girl. The mother, with no more tools than her own desperation, is asking for help from anyone who can assist with the formula or the medications that keep her daughter alive.
In a country where the shortcomings of the healthcare system are increasingly felt, stories like Yoseily's reveal the human cost behind those absences.
Those who wish to help can go to the pediatric hospital in Camagüey, Gastro ward, bed 11, where both are hospitalized.
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