Noel Zayas paraded his son to a never-ending carousel of Cuban doctors, but none of them would touch the boy.
Emanuel Zayas’s basketball-size facial tumor was too complex, they told his family. The surgery to remove it too risky.
“I knocked on a lot of hospital doors,” Zayas told the Miami Herald. “To see our son deforming and all we can do is watch, it’s not easy.”
Emanuel, a 14-year-old ninth-grader, has a disorder called polyostotic fibrous dysplasia, in which the body replaces portions of bones with fibrous tissues, according to the Mayo Clinic.
The condition began affecting Emanuel’s left arm and leg when he was 4, but it became life-threatening in adolescence, according to the Associated Press.
At age 11, the boy noticed what he thought was a pimple growing on the side of his nose. But it wouldn’t stop growing. Now it weighs 10 pounds and is the size of his head.
“The tumor has taken over his face, and has severely affected the bone structure of his upper jaw and nose,” according to the Jackson Health Foundation, a nonprofit that raises money for cases like Emanuel’s.
By the time he was 14, Emanuel could breathe only through his mouth and was “extremely malnourished.” His eyes work fine, but his vision is obstructed by the growth on his face.
The giant tumor is benign — its cells will never spread to other parts of his body. But the tumor, if left untreated, will eventually kill Emanuel. As it grows, it begins to crush his windpipe, slowly suffocating the teen. Doctors fear it could snap his neck.
Hope came in the form of an American missionary who had met the boy in Cuba and sought to connect him with Dr. Robert Marx, chief of oral and maxillofacial surgery for the University of Miami Health System, according to the Herald.
Marx had originally heard about Emanuel’s case at a medical conference. He was one of the few people who could identify it on sight, according to the Herald, because he had operated on a Haitian woman with a 16-pound facial tumor a decade ago.
And in 2008, during a marathon 14-hour surgery, Marx removed a facial growth that started out as a cyst on a Vietnamese girl’s face. It grew into a tumor that consumed the lower half of the girl’s face and accounted for a fifth of her body weight, according to ABC News.
Now, Marx and other doctors are volunteering their expertise and time, and other benefactors are trying to raise the more than $200,000 that it would cost to complete the surgery.
Three weeks ago, they flew Emanuel and his family to Miami. The surgery is scheduled for Jan. 12.
But their altruism by no means guarantees success.
The surgery will take a team of four surgeons half a day. They’ll have to remove the tumor, but also preserve Emanuel’s blood flow — all while reconstructing his nose so he can breathe again.
And they have to ensure that they get the entire tumor, or it will grow back.
After the initial surgery, he’ll need other procedures to reconstruct his jaw and cheek, and to implant prosthetic teeth.
If it goes according to plan, his parents hope that in addition to being able to breathe, their son’s life will return to normal.
He had soldiered on despite his condition, making friends, attending public school. From a distance, the only sign that something was amiss were the crutches that he used to walk.
But when the tumor grew, his parents pulled him out of school. The cane was replaced with a wheelchair and his friends were replaced with isolation.
“He likes socializing,” the boy’s mother, Vizaino Zayas, said. “He has always been very connected to his community.”