Emanuel Zayas was born in Santa Clara, Cuba, with polyostotic fibrous dysplasia: bone replaced by fibrous tissue in the limbs and skull. Medication held it for years. At about eleven, a spot beside his nose that looked like a pimple became an ossifying fibroma. In three years it grew to roughly ten pounds—about 4.5 kilograms, the size of a basketball. It covered most of his face, blocked vision, forced mouth-breathing, and made eating so hard he was severely malnourished. Doctors warned the mass could snap his neck.

His parents, Noel Zayas and Melvis Vizcaino, evangelical pastors, could not get the tumour removed in Cuba. Missionaries from Reel Life International brought images to a conference. Dr Robert Marx, chief of oral and maxillofacial surgery at the University of Miami / Jackson Health, recognised a class of giant facial tumours he had operated on before (including Marlie Casseus of Haiti). The family received a humanitarian visa and arrived in Miami on 27 November 2017.

On 12 January 2018 a team at Holtz Children’s Hospital, Jackson Memorial, spent about twelve hours taking the mass off. The resection succeeded. Days later kidneys and lungs failed. Emanuel died on 19 January 2018. He was fourteen. Marx said the family donated his remains so the dysplasia and the fibroma could be studied.

The photographs—UHealth and Jackson banners, the parents leaning in, the boy’s head still dominated by the unresected bulk—are from the December press conference before the operation. The Spanish caption is correct on the pimple that was not acne, the flight to Miami, Marx, and the donation. The “dream of a new life” ended in the ICU, not in a reconstructed face. Benign does not mean safe when the tumour weighs as much as a small child and sits on an airway and a cervical spine.

Sources

• Miami Herald, 21–22 January 2018: death after kidney and lung failure; body donated
• CBS News / TODAY / WSVN: polyostotic fibrous dysplasia, ossifying fibroma from age 11, ~10 lb tumour
• Dr Robert Marx, University of Miami Health System / Holtz Children’s Hospital at Jackson Memorial
• Reel Life International missionaries; parents Noel Zayas and Melvis Vizcaino