A baby born in Yaguajay, a municipality in Sancti Spíritus, urgently needs help after being diagnosed with epidermolysis bullosa, a genetic, degenerative, and incurable disease that causes extreme skin fragility, for which the Cuban healthcare system does not have the necessary supplies.
The call was shared on Facebook by Shakira Ochoa Olivera, who described the situation of the little boy, originally from the town of El Río.
Ochoa Olivera clarified that medications and supplies are prioritized over cash, although financial support is also accepted for those who cannot send materials: "We prefer medicines over money, but many people ask me for the card because they are from far away and want to contribute."
The person responsible for receiving and managing the resources is Misleydis Díaz, the baby's aunt, who is directly in charge of their care.
"I know the situation is tough for everyone, but there are others who have it worse. Contributing a little to a cause like this is always worthwhile. We never know when we might be the ones in need," Ochoa Olivera noted.
User Daniela Matías listed on the medications and products needed for the baby: Gentamicin, Hydrocortisone, triple antibiotic, vaseline, and neutral pH bath gel.
Those who wish to collaborate can contact Misleydis Díaz in Cuba at +53 5 9063113 and Shakira Ochoa at 54358050, or Daniela Matías in the United States at +1 (954) 766-5412.
Subsequently, Ochoa Olivera thanked the individuals who have donated baby clothes, medications, diapers, and hygiene products to help the child in his fight against illness.
"Each contribution, no matter how small it may seem, means a great deal to him and his family," he said on Facebook, where he shared photos of the donated items.
"Let's continue to share. Let's continue to help. Let's continue to show that when a community comes together for the life of a child, there are no borders that can stop it," he emphasized.
Bullous epidermolysis —commonly known as "butterfly skin disease"— is a rare hereditary condition estimated to affect one in every 50,000 newborns. The skin of those affected blisters and injures with the slightest touch, heat, or friction. In the most severe cases, blisters can also form in the mouth, throat, or stomach, and complications include infections, sepsis, malnutrition, and anemia.
Increasingly, similar cases are appearing on social media in Cuba: families with children suffering from skin diseases who must rely on networks of solidarity because the healthcare system does not provide the basic supplies they need. Non-stick dressings, gauzes impregnated with petroleum jelly, silicone dressings, and topical antibiotics that these patients require daily are practically impossible to find in the country.
In July 2024, the case of Liam Vento Garriga, a boy from Pinar del Río was documented, marked then as the only case in that province among the approximately 27 registered in Cuba. Months later, his father appealed for help again because there was no proper material for his treatment available in Cuba.
In June of this year, also from Sancti Spíritus, Nashly's family, a baby with lamellar ichthyosis, another rare genetic skin condition, was asking for help to obtain Aveeno cream, which is also unavailable in Cuba.
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