Emanuel Zayas, 14, was born with polyostotic fibrous dysplasia, a condition that replaces tissue with bone causing deformities of the legs, arms, and skull. He is suffering from a 10-pound tumor on his face is set to undergo life-saving surgery to remove the mass before it suffocates him.
When Emanuel was 11, he thought he had a zit on his It was skull bone growing from his upper jaw into a basketball-sized benign tumor that has severely affected the way he eats, sees and talks, leaving him unrecognizable.
The tumor though non-cancerous is life-threatening because if it continues to grow it will suffocate him and the weight of it, will fracture his neck.
Dr. Robert Marx of University of Miami Health systems will lead the surgery to remove the tumor: ‘In addition to improving his vision, airways, and ability to eat, we hope the surgery will give the boy back his identity.’
Emanuel and his family flew from their native Cuba to Miami on a medical visa to undergo surgery to save his life.
The condition he has caused the bone to grow where tissue should and in this case has grown from his upper jaw and consumed his face.
Emanuel has a genetic deformation, and it is unknown what causes the anomaly. Emanuel can only breathe through his mouth and has become extremely malnourished because the growth makes chewing difficult.
Because the tumor is so large, it blocks his vision leaving the boy only able to look up and to the side. In addition to the tumor, his condition also causes fractures and curvature of his arm and leg, leaving Emanuel unable to walk.
Dr. Robert Marx came across Emanuel’s case and immediately offered his help. He will lead the surgery with a team of four doctors who will spend 10 to 14 hours to completely remove the mass.
Dr. Marx said that the two big risks of the surgery will be: bleeding and compromising Emanuel’s airways. Emanuel began showing signs of the condition at the age of two when his leg and arm began curving in outward.
Doctors in Cuba were able to control his symptoms until the age of nine when his skull began to swell and deform. They were able to administer medication that quelled the deformities.
However, the last three years, Emanuel’s parents have been desperately seeking medical help as the tumor continued to consume his face.
Dr. Marx has treated a facial tumor of this size. He is one of the few doctors in the US who specializes in operating extreme size tumors. He has operated on Lai Thi Dao who had a 12-pound face tumor and Marlie Casseus whose tumor weighed 16 pounds.
Even though Dr. Marx and his team are donating their time and skill to Emanuel free of charge, there will need to be follow up surgeries to reconstruct Emanuel’s face for which the Jackson Health Foundation is fundraising.
To reconstruct part of his cheekbone, upper jaw, and nose, they will remove a bone from his hip. He will need teeth implants because his current teeth are inside of the tumor and will be removed with it.
Emanuel’s mother Melvis Vizcaino said: ‘It is truly a miracle of God that his pictures ended in the hands of Dr. Marx. I am so grateful he was willing to take the case.’
Emanuel’s first lifesaving surgery will take place at Holtz Children’s Hospital in January.
IKF 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.
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