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The fight for survival and relief from pain has led Frank Luis Vento García, the father of a three-year-old boy with a rare and devastating skin disease, to desperately turn to social media to seek help.
From their Facebook profile, Vento made a heartfelt appeal to obtain an essential medication that has shown positive results in treating the painful lesions suffered by their son Liam, who has been diagnosed with congenital epidermolysis bullosa, also known as "butterfly skin" or "glass skin."
"Please, share," Vento implores at the beginning of his post, written with the urgency of a parent who cannot find answers in the Cuban healthcare system.
"Liam was born with a very rare disease. Not everyone is familiar with it because out of every thousand children, one is born with this skin condition," he explained.
"In Cuba, there is no suitable material for his treatment," he specified.
A medication that is difficult to obtain
Vento explained that recently a supportive individual managed to send him a cream called Terrasil 3X, a treatment that is not available in Cuba and has proven to be remarkably effective in alleviating the little one's wounds.
"In just one week, we have seen very good results. Injuries heal quickly and effectively," he assured.
The treatment, combined with special pads that prevent the bandages from sticking to the wounded skin, has made a crucial difference in the child's well-being.
However, since these are imported products, the family does not have the means to acquire them on their own. That's why Frank Luis turns to the solidarity of those who can help from abroad, mainly from the United States, where this type of specialized medication is sold.
"I know that not everyone in the U.S. is in a good situation, but anyone who can help us with this medication, I will be grateful for as long as I live," he wrote, leaving his mobile contact number (56682689) for any possible donations or collaboration.
A rare and painful disease
Congenital epidermolysis bullosa is an extremely rare genetic disorder that affects the skin and mucous membranes. It is characterized by the formation of blisters, ulcers, and painful wounds at the slightest touch or friction. In severe cases, it can even cause damage to internal organs, loss of nails, esophageal stricture, and serious feeding difficulties.
The testimony of the father recalls another well-known case in Cuba, that of Melany Correa, a girl from Sancti Spíritus who also suffers from this disease.
Since birth, her life has been marked by physical suffering and isolation, despite medical support and government assistance. In her case, the State provided her with a home with better conditions and social support, including pensions and basic medical supplies.
However, not all patients with this disease receive the same level of care.
An unequal battle for life
Liam's case highlights the limitations of the Cuban health system in addressing rare and highly complex diseases.
Vento assures that, although he has received sporadic gestures of help from anonymous individuals, the reality is that the constant and proper treatment his son needs is not available in the country.
The father appreciates every display of support, even from those who approach him without knowing him, just to give him care materials. "Some people come up to me at work without knowing me and say: this is for your son. There are no words to thank them," he wrote.
The post has been widely shared on social media by Cubans both inside and outside the country, who aim to help the message reach people, organizations, or medical entities that can assist with the shipment of the Terrasil 3X medication and other necessary supplies.
A call to empathy
In Cuba, where material shortages affect even those who do not face complex illnesses, Liam's story is an urgent reminder of the need for specialized care for those suffering from exceptional medical conditions.
The butterfly skin disease not only physically drains those who suffer from it, but also imposes a tremendous emotional and financial sacrifice on their families.
Frank Luis Vento does not ask for luxuries or privileges. His plea is simple and powerful: access to the medication that gives his son a chance to live with less pain.
In a country where everyday heroism often goes unnoticed, the story of this father and his young son is a struggle for dignity, health, and above all, hope.
Frequently Asked Questions about Finding Medications and Medical Care in Cuba
What is congenital epidermolysis bullosa or "butterfly skin"?
Bullous congenital epidermolysis, known as "butterfly skin," is an extremely rare genetic disorder that affects the skin and mucous membranes. It is characterized by the formation of blisters, ulcers, and painful wounds at the slightest touch or friction. In severe cases, it can cause damage to internal organs and significant feeding difficulties.
What challenges does the Cuban healthcare system face in treating rare diseases?
The Cuban healthcare system faces serious limitations in treating rare and complex diseases due to a lack of medications and specialized equipment. Diseases such as "butterfly skin" do not have the appropriate materials for treatment in Cuba. This forces families to seek international help and rely on the solidarity of people abroad.
How can people abroad help Cuban patients with rare diseases?
People abroad can help by sending medications and medical supplies that are not available in Cuba. For example, the medication Terrasil 3X has proven effective in treating the wounds of a child with "butterfly skin." Donations and spreading awareness of these needs on social media are crucial for assisting these families.
What other cases of medication shortages have been reported in Cuba?
In Cuba, numerous cases have been reported of shortages of essential medications, such as that of a baby with seborrheic dermatitis who requires gentamicin and hydrocortisone cream, or the young Manuel Alejandro with cystic fibrosis who needs antibiotics like Cefiderocol. These shortages reflect a crisis in the Cuban health system that affects patients with various conditions.
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