Grandmother asks for medical attention for girl with rare disease in Cuba

After seven days of treatment, fresh water boosters and Ciprofloxacin arethe only option available for a 13-year-old Cuban girl who has beenfighting a rare disease called Proteus syndrome.

Despite trusting Cuban medicine, lack of clinical trials for this disease led the family to desperately search for a solution, and although they managed to find someone willing to take charge of the case in 2016, the state bureaucracy prevented the aid from continuing, explained the girl's grandmother Ivón del Pilar Tejo Galán.

The grandmother expressed her wish that the girl be given the opportunity to improve, where possible and although there is currently no known cure,The family urges Cuban authorities not to let human obstacles cloud decision-making.

In 2016, the family contacted a foundation and contacted the girl's primary doctor. DNA testing and regulatory examinations were requested, andThe foundation agreed to cover the costs of the transfer.

However, an official of theMinistry of Public Health He indicated that approval could only be granted by the then president, Raúl Castro, and that they had to wait.

"I can respond to everything I am proposing, with names of those involved, I am totally responsible for what I say and they for what they do," said Tejo Galán.

Clarified thatIts objective is not to do politics, but to desperately seek a solution for the life of their granddaughter, which they consider non-negotiable.

"We will not stop insisting"Someone has to respond, I hope it's my country first, with some immediate solution," she said, hopefully.

Likewise, the girl's grandmother said that she has contacted different personalities, in order to obtain a solution for this case and hopes that soon someone will take pity on the case and can offer them the help they need.

"If not, I will go to the 11 thousand virgins, that my strength and my mind allow me," he concluded.

HeProteus syndrome It is a very rare complex hamartomatous overgrowth disorder, which is characterized by progressive overgrowth at the level of the skeleton, skin, fat and central nervous system.

In Cuba there are at least six cases diagnosed with this rare disease, andCyberCubaspoke in March with Ariadna Hernandez Garrido, mother of a girl who suffers from it.

Thesocial networks are the most common space in which Cubans express their concerns and problems, hoping to find help inside or outside the country.

Currently, thegeneral crisis that Cuba is going through, with a shortage of medicines, food, electricity, among others, makes the lives of citizens increasingly difficult.

Requests forhumanitarian visasto treat various diseases,patients who do not have access to medicines or essential supplies andhospitals without response capacity, are very frequent and Cubans denounce it, despite the repression and the laws that sanction this type of activities.