An infant born in Yaguajay, a municipality in Sancti Spíritus, is in dire need of assistance after being diagnosed with epidermolysis bullosa. This genetic disorder is both degenerative and incurable, leading to extreme skin fragility, and the Cuban healthcare system lacks the necessary resources to treat it.
The plea for help was shared on Facebook by Shakira Ochoa Olivera, who outlined the dire situation of the child from the El Río area.
Ochoa Olivera emphasized the need for medications and supplies over cash, although financial contributions are also welcome for those unable to send materials directly: "We prioritize medicines over money, but many people ask for the card because they're far away and want to contribute."
The resources are managed by Misleydis Díaz, the baby's aunt who is directly involved in her care.
"I understand that everyone is facing tough times, but some have it even harder. Contributing to a cause like this is never too much. We never know when we might be the ones in need," Ochoa Olivera remarked.
Facebook user Daniela Matías listed the medications and products needed for the baby: Gentamicin, Hydrocortisone, Triple antibiotic, Vaseline, and pH-neutral bath gel.
Those wishing to help can reach out to Misleydis Díaz in Cuba at +53 5 9063113, Shakira Ochoa in Havana at 54358050, or Daniela Matías in the United States at +1 (954) 766-5412.
Understanding Epidermolysis Bullosa
Epidermolysis bullosa, often referred to as "butterfly skin disease," is a rare hereditary condition estimated to affect one in every 50,000 newborns. The skin of individuals with this condition blisters and becomes injured with the slightest touch, heat, or friction. Severe cases can lead to blisters in the mouth, throat, or stomach, with complications including infections, sepsis, malnutrition, and anemia.
Social media increasingly highlights similar cases: families with children suffering from skin disorders reliant on solidarity networks due to the lack of basic supplies from the healthcare system. Essential items such as non-adherent dressings, Vaseline-impregnated gauze, silicone dressings, and topical antibiotics are nearly impossible to obtain in Cuba.
In July 2024, the case of Liam Vento Garriga, a child from Pinar del Río with the same condition, was reported. He was then considered the only case in that province among approximately 27 registered in Cuba. Months later, in April 2025, his father once again sought help due to the unavailability of suitable materials in Cuba for his care.
In June of this year, another family from Sancti Spíritus sought help for Nashly, a baby with lamellar ichthyosis, another rare genetic skin disorder, as they struggled to find Aveeno cream, which is also unavailable in Cuba.
Frequently Asked Questions about Epidermolysis Bullosa in Cuba
What is epidermolysis bullosa?
Epidermolysis bullosa is a genetic disorder causing extremely fragile skin that blisters easily. It is often referred to as "butterfly skin disease" due to the delicate nature of the skin.
How can people help families affected by this condition in Cuba?
People can help by providing essential medications and supplies or by offering financial support to families unable to source these materials locally due to the Cuban healthcare system's limitations.
Why is it difficult to obtain necessary medical supplies in Cuba?
The Cuban healthcare system is plagued by shortages and lack of access to necessary medical supplies, often forcing families to rely on external aid and solidarity networks.