What he thought was a zit on his nose at age 11, 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.
A 14-year-old suffering from a 10-pound tumor on his face is set to undergo life-saving surgery to remove the mass before it suffocates him.
Emanuel Zayas, 14, was born with polyostotic fibrous dysplasia, a condition that replaces tissue with bone causing deformities of the legs, arms and skull.
Though the tumor is non-cancerous, it is life-threatening because if it continues to grow, the size will suffocate him and the weight will fracture his neck.
Dr Robert Marx of University of Miami Health systems will lead the surgery to remove the tumor next month and told Daily Mail Online: ‘In addition to improving his vision, airways and ability to eat, we hope the surgery will give the boy back his identity.’
Emanuel Zayas, 14, has a basketball-sized tumor growing on his face due to a rare disorder that causes bone to grow instead of tissue
The boy from Cuba can only breath out of his mouth and is malnourished due to the tumor consuming the front of his face
Emanuel and his family have flown from their native Cuba to Miami on a medial visa to undergo surgery that will save his life next month.
His condition causes bone to grow where tissue should and in this case, has grown from his upper jaw and consumed his face.
It is a genetic deformation and it is unknown what causes the anomaly.
Emanuel can only breathe through his mouth and is extremely malnourished because the growth makes chewing difficult.
The tumor is so large that 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 to his arm and leg, leaving him unable to walk.
Two months ago Dr Robert Marx came across Emanuel’s case and immediately offered his help.
He will lead the surgery next month 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 first started to show 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. More medication quelled the deformities.
But for the last three years Emanuel’s parents have been desperately seeking medical help for their son as the tumor continued to consume his face.
X-rays show the large benign mass that is made of bone growing from the boy’s upper jaw
Doctors said that if the tumor continues to grow it will suffocate Emanuel and could fracture his neck
He suffers from polyostotic fibrous dysplasia which causes bone fractures and deformities. Emanuel’s leg and arm is deformed and he cannot walk
What is polyostotic fibrous dysplasia?
Fibrous dysplasia is an uncommon bone disorder in which scar-like (fibrous) tissue develops in place of normal bone.
This irregular tissue can weaken the affected bone and cause it to deform or fracture.
Polyostotic means it affects multiple bones.
There’s no cure for the disorder. Treatment, which may include surgery, focuses on relieving pain and repairing or stabilizing bones.
People who have more than one affected bone typically develop symptoms before the age of 10.
Symptoms include bone pain, swelling, deformity, bone fractures, curvature of leg bones.
This not the first time 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, including the internationally known cases of patients Lai Thi Dao who had a 12-pound face tumor and Marlie Casseus whose tumor weighed 16 pounds.
Dr Marx and his team are donating their time and skill to Emanuel free of charge.
However, there will need to be follow up surgeries to reconstruct Emanuel’s face for which the Jackson Heath Foundation is fundraising.
Emmanuel’s next surgeries will take bone from his hip to reconstruct part of his cheekbone, upper jaw and nose.
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 is scheduled to undergo his first lifesaving surgery 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.