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MIAMI (CBSMiami) – A 14-year-old boy from Cuba is in Miami hoping that a Christmas miracle will save his life.

When Emanuel Zayas was born he was diagnosed with a rare 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 two years old.

By the time he was nine, his condition worsened but doctors controlled it with medication. When he was 11, doctors diagnosed what Emanuel thought was a pimple on his nose as an ossifying fibroma. Over the last three years, the benign tumor grew and now weighs approximately 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.

Two months ago, Dr. Robert Marx, chief of oral & maxillofacial surgery at UHealth-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 extreme size tumors.

“It’s life threatening by it’s very weight,” Dr. Marx explained at a news conference on Friday morning. “If nothing is done it will cause a fracture of his neck or it will suffocate him from breathing just by its physical size.”

“It is truly a miracle of God that his pictures ended in the hands of Dr. Marx,” said Melvis Vizcaino, Emanuel’s mother. “I am so grateful he was willing to take the case. He and everyone at Jackson has shown us so much compassion.”

She said at the news conference Friday, “I thank the Lord. I’m so glad the doors were open to come here. We’ve been helped by so many who don’t know us.”

Emanuel’s father agreed, “I thank God for the opportunity to come here. I’m grateful for these wonderful doctors.”

As for Emanuel, he said he feels good about the future and he’s happy.

Zayas is scheduled to undergo his first surgery in January at Holtz Children’s Hospital at the University of Miami/Jackson Memorial Medical Center.

Dr. 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.

Jackson Health Foundation’s IKF Wonderfund is raising funds to provide medical care for Zayas. Donations can be made online at jacksonhealthfoundation.org/emanuel.

 

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