Emanuel Zayas, 14, was born with a disorder called polyostotic fibrous dysplasia, a condition that replaces multiple areas of bones with fibrous tissue and may cause fractures and deformity of the legs, arms, and skull. In Emanuel’s case, the condition began affecting his left arm and leg when he was 2. For the most part, Emanuel continued to live a normal and healthy life in his native Cuba.
But at age 9, his condition worsened. Emanuel began to experience swelling and some deformity in his skull, which doctors managed to control with medication. Then, when he was 11, he noticed what appeared to be a pimple growing on the left side of his nose. The bump grew excessively and was later identified as an ossifying fibroma – an extremely large benign tumor that now weighs about 10 pounds, and is the size of a basketball. The tumor has taken over Emanuel’s face, and has severely affected the bone structure of his upper jaw and nose. He can only breathe through his mouth, and is extremely malnourished due to this tumor.
For the past three years, Emanuel’s parents have been desperately seeking medical help for their son, with no real success. Two months ago, Robert Marx, DDS, chief of oral and maxillofacial surgery at the University of Miami Health System, learned about Emanuel and immediately offered his help.
Marx has extensive experience treating similar facial tumors, and is one of the few doctors in the country who specializes in operating on extremely large tumors, including the internationally known cases of patients Lai Thi Dao and Marlie Casseus.
“It’s life-threatening by its very weight,” Marx said at a news conference held at Jackson on December 22 to share Emanuel’s story publically and raise funds for his reconstructive surgeries and medical care. “If nothing is done, this will cause a fracture of his neck or it will suffocate him from breathing by its physical size. “We as surgeons are not charging him any kind of money because how can you not help this young man?” said Marx. “However, you figure if we do two additional surgeries for reconstruction, I would guess that we’re into almost $200,000.”
Emanuel’s initial surgery has been set for Jan. 12 at Holtz Children’s Hospital at the University of Miami/Jackson Memorial Medical Center. Marx and other members of the oral and maxillofacial reconstructive team will remove the tumor during a surgery that is expected to last 10 to 14 hours. A few months later, Emanuel will likely undergo a second surgery, in which doctors will use bone from his hip to reconstruct part of his cheekbone, upper jaw, and nose.
“It is truly a miracle of God that his pictures ended in the hands of Dr. Marx,” said Melvis Vizcaino, Emanuel’s mother, who traveled with Emanuel along with his father, Noel Zayas. “I am so grateful he was willing to take the case. He and everyone at Jackson has shown us so much compassion.”
International Kids Fund Wonderfund – a Jackson Health Foundation program that helps critically ill children from countries around the world gain immediate access to lifesaving or life-changing medical treatments – took Emanuel’s case. Emanuel and his parents arrived in Miami from Cuba last month. IKF is currently raising funds for his case, and donations can be made online at JacksonHealthFoundation.org.
“Please be generous so Emanuel can have a future, a happy life like a 14-year-old that can do everything he wants to do,” said Mariana Martinez, Chair of IKF Wonderfund.
Additional photos from the news conference are available here.