Emanuel had been taken to the United States by his parents to go through a complex and costly operation to remove the tumor, with a total cost, between medications and hospitalization, estimated at US $200,000
“Apparently, the physiological stress of the surgery was too much for his anatomy already compromised. Our hope of saving his life and giving him a better living condition did not materialize, “said Robert Marx, chief of Surgery maxillofacial of the health system of the University of Miami, Florida, on his Facebook account.
“The family has opted to donate their body to medical research in the hope that they learn more about this rare evil and that it helps people all over the world.”
Emanuel with parents
Image CaptionFamília began to notice the symptoms when the boy was 2 years old
In early January, the BBC World interviewed Emanuel and his parents, who described how the adolescent developed the tumor that covered most of his face and obstructed his visual field, nasal passages and mouth.
He also no longer allowed him to maintain the balance of his head or walk, as well as to hinder the feeding, which caused the adolescent to become malnourished.
“It all started when he was 12 years old. A little ball arose in his nose that we thought was acne, but it was growing and growing until it came to that point, “then told his mother, Melvis Vizaino.
She and her husband went out looking for possible solutions on the island, but they found no answers. “It’s horrible to see a son deformed like that. We were desperate for our impotence. ”
In 2013, a group of American missionaries visited the Evangelical Church that was helping the family in the province of Villa Clara in the center of Cuba. They met the case and made the bridge with specialists in the United States.
An atypical case
Robert Marx (dir.) with other doctors
Image CaptionMédicos feared for Emanuel’s life if he did not do the operation
Almost four years later, his parents met Marx, who had operated similar tumors. The American doctor diagnosed a rare and non-hereditary genetic condition: polyostotic fibrous dysplasia.
This causes a fibrous tissue to grow in place of a bone, which facilitates deformations at the extremities of the body and the emergence of cancer – a tumor had already been removed from his hip when he was very small.
Emanuel came to be treated to inhibit the emergence of new tumors, but when he entered adolescence, the bulge arose in his nose. “It is an atypical case and fraught with risks, but the operation is necessary,” he said at the time.
It was feared that the tumor would clog his mouth, the only way he could feed or breathe, and that the weight of his head would lead to a fatal fracture to his neck. Emanuel was operated on January 12 at Jackson Hospital in Miami in a long surgery.
“The night before, I visited Emanuel and glimpsed a hope from the reflections of his pupils and his facial muscle tone. But I was informed the next morning that his condition worsened considerably, his kidneys and liver failed, “published Marx.
Emanuel had studied until last year when the tumor prevented him from continuing to attend school. He said that what he wanted to do most when he didn’t have the tumor was to go back to school. I wanted to be an architect or a computer scientist.