Without medicine, diet and housing: the reality of a girl with Down Syndrome in Cuba

SANTIAGO DE CUBA.- Yenmi spreads joy and desire to live to everyone, despite the fact that things become difficult. Her father, Michel Santamaría Balladares, told CubaNet that the girl “has many more friends than he would ever dream of having.” Yenmi is three years old and suffers from Down Syndrome; as well as other pathologies associated with this disorder.

“She was diagnosed at birth, and that news was devastating for us. Since then we have dedicated our lives to helping her. My little girl has had to fight against her death since her first day on this earth, and we with her, ”confessed Balladares, who lives, along with her family, in the municipality of Puerto Padre, in Las Tunas.

During her first year, Yenmi was in critical condition four times, and “each time was worse than the last”. She began with acute episodes of diarrhea and when they arrived at the hospital she was already dehydrated and malnourished. She got to have hemoglobin at six. In that course, the doctors concluded that she had lactose intolerance, so she cannot eat dairy, its derivatives, or other products that contain this nutrient; such as bread, puree, soup, meats, sausages, condiments, sweets, etc.

courtesy photo

Although Down Syndrome is a genetic disorder that affects intellectual capacity and, therefore, leads to developmental delays, those who suffer from it tend to have a higher risk of presenting digestive problems due to congenital malformations in the digestive tract or character alterations. immune. In Yenmi’s case, the stomach ailments may ease when she is older, meanwhile, her diet is very restricted.

On the other hand, the little girl has a heart condition that is controlled so far. But the current stability does not exempt it from problems in the future. She was born with an “intraventricular foramen” or IVC, as it is also known in cardiology.

In this regard, Dr. Roberto Serrano Delis explained: “Basically, IVC occurs when there is a hole in the wall that separates the two lower chambers of the heart, because it does not fully develop.”

“This is one of the most common congenital heart diseases in Down syndrome, precisely because of the trisomy that occurs in chromosome 21 in said disorder. Although patient Yenmi is stable, the consequences of VSD could be pulmonary hypertension, heart failure, among others, just as serious. Therefore, she needs a lot of attention and strict surveillance,” stressed the doctor.

Government neglect

However, far from being cared for, the minor has been abandoned by a system that does not take her disability as a priority. So much so that she has not had a Gastroenterology consultation for more than six months because “the specialist never shows up”. In addition, she hasn’t received a special soy-based supplement for more than a year, which she needs to stabilize her digestive system, because she doesn’t make it to the Provincial Pediatric Hospital.

Without medicine, diet and housing: the reality of a girl with Down Syndrome in Cuba
Yenmi’s house and her parents. courtesy photo

“Every time we went to the consultation they told us something different, that there was no doctor or some other lie. And it’s the same story with medicine,” the father denounced.

This supplement is called Prolacsin and is indicated to counteract allergies in Cuban children with lactose intolerance. Before receiving it, the little ones must be diagnosed by a pediatric gastroenterologist. Prolacsin is made in the dietary laboratories of Bayamo, Granma, but now it is only distributed at the Hospital level. However, for months it has been lacking, like so many other medicines, due to the deep crisis that the island is going through.

Similarly, Yenmi also needs a specific diet that the Cuban government has completely denied her, even when other children with the same condition have a quota of the so-called Established Basal Formula, which regulates the foods of medical diets and the time of validity.

“They left us to our fate. The way things are in this country, I have to invent every day so that she can eat”, lamented Balladares.

housing problems

On the other hand, Yenmi, her father and her mother, Yeneisy Jiménez Batista, live with other people in a house without the minimum conditions. They have gone to all the instances of the local government to help them solve their housing problem, based on the fact that they have a girl with a disability, but, after many disputes, they only received a plot of land that still remains barren and with no signs of construction. .

Without medicine, diet and housing: the reality of a girl with Down Syndrome in Cuba
House of Yenmi and her family. courtesy photo

“In October 2021, when all the procedures were stopped due to Covid-19, we found out that the mayor of Puerto Padre, Walter Velázquez Jorge, was doing the paperwork for a plot of land for him. We went to complain, but his secretary told us that we were ungrateful, ”said Bárbaro.

“They must understand that he is a human being and has more priority than your daughter, he told my wife and me to our faces. That hit us like a bucket of cold water, ”she recalls.

Around those same days, the Governor of La Tunas visited Puerto Padre and Yenmi’s parents stood with her, under the sun, outside the Party, waiting for her to arrive. The leader arrived at noon, and when he was leaving they literally threw themselves in front of his car so that he would attend to them. After the interview, a Commission was created to give the land to the family. Although they were denied any help to build, on the basis that “her daughter did not meet the requirements to enter a State Financing Plan.”

Without medicine, diet and housing: the reality of a girl with Down Syndrome in Cuba
courtesy photo

“The site is located at Calle Francisco Vicente Aguilera #36, and since they gave it to us more than a year ago, it is the same. Because they haven’t given us any chance to buy materials,” he told CubaNet.

Yenmi’s parents do not have a permanent job. The mother dedicates herself to taking care of the little girl, while Michel practices fishing or sells itinerantly to look for sustenance. Therefore, his economic income is quite discreet.

Retaliation for Reporting

“Since Yenmi was born, I have never been silent. I denounce everything, regardless of the consequences,” said Santamaría Balladares, who has been questioned by State Security and the Police and charged with threats. Mayor Velázquez Jorge said that he had threatened to hit him.

“I went to the station several times, and even the Sector Chief wrote me a warning letter, for something I didn’t do. More than once they have threatened to disappear me and tried to persuade me with my daughter, but they have not managed to get her to stop denouncing her negligence, ”she asserted.

Yenmi with her dad. courtesy photo

However, they are willing to pay the price for trying to get Yenmi ahead. Although it becomes very difficult without the support of the Government. To date, none of the organizations that exist in Cuba to “support” people with intellectual disabilities and their families has provided assistance to these people.

“Thank God, Yenmi is a very insightful and outgoing girl, so her learning is going very well so far,” Santamaría said.

Without medicine, diet and housing: the reality of a girl with Down Syndrome in Cuba
Land given to Yenmi’s family. courtesy photo

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