It started out as what his mother thought was just a pimple, a small indignity for a boy beginning puberty.
About two years later, what appeared to be a blemish has grown into a 10-pound tumor on 14-year-old Emanuel Zayas’ face. The mass that’s bigger than a basketball is benign, but threatens to fracture the boy’s neck or suffocate him.
Emanuel, who is from Villa Clara, Cuba, and his parents recently arrived in Miami on a medical visa, so doctors can attempt to remove the tumor and give the boy back his normal life. He is scheduled to undergo surgery on Jan. 12 at the University of Miami’s Jackson Memorial Holtz Children’s Hospital.
“It’s not going to travel to other parts of his body, but it is life-threatening by it’s very weight,” said Dr. Robert Marx, chief of oral and maxillofacial surgery for the University of Miami Health System.
Marx learned of Emanuel’s case at a medical conference where a group of missionaries presented X-rays and photos of the boy, according to the Miami Herald. Doctors in Cuba were not able to diagnose what the problem was and would not operate on the boy.
But Marx, who had previously operated on patients with large facial tumors, knew what it was: a rare disorder called polyostotic fibrous dysplasia, which is causing Emanuel’s body to develop scar-like tissue instead of bone.
The tumor, which covers much of Emanuel’s face and labors his breathing, is not the largest tumor Marx has operated on. More than a decade ago Marx removed a 16-pound facial tumor from Marlie Casseus.
“I knocked on a lot of hospital doors,” said the boy’s father Noel Zayas, according to the Herald. “I thank God that we’re here and that this country and Jackson Memorial would welcome us. … To see our son deforming and all we can do is watch, it’s not easy.”
It is expected to take surgeons about 12 hours to remove the tumor and reconstruct the boy’s nose. Doctors say Emanuel will also need more surgeries to reconstruct his cheek, jaw and to implant prosthetic teeth.
Marx and his fellow doctors are volunteering their time, and the IKF Wonderfund, the Jackson Health Foundation program that assists critically ill children around the globe, is raising money to pay for Emanuel’s hospital stay and other medical costs associated with the surgeries.
The cost of the procedures could top $200,000.