Vincent Oketch was about eighteen months old when his legs began to swell in the village of Peta, Uganda. His parents, too poor for a clinic, watched the swelling keep pace with his growth. By ten he could barely crawl. The limbs were darker, softer and heavier than his trunk; relatives said they weighed more than the rest of him. He had outgrown every pair of shorts. He wore dresses and skirts. Other children teased him for the pink cloth. His father, Tito Opoya, said it upset him.

Local doctors spoke of a lymphatic failure from birth — fluid that had nowhere to drain — mixed with elephantiasis and deformed tissue. Scans in Kampala showed a dislocated hip and broken ankles inside the mass. A biopsy then raised the possibility of necrotising fasciitis, a flesh-eating infection that can kill if it is not cut out. Diagnoses contradicted one another. Facilities were basic.

Dr Isaac Osire, who runs EDYAC, an organisation that ferries village children toward treatment, drove Vincent to hospital and then appealed in the British press. “The case is extremely complex and we’d like to find out if there is anything that can be done to save his legs,” he said. Surgeons at a Kampala hospital talked of amputating at the thighs. Osire wanted a second opinion from abroad before that sentence was carried out. Vincent was also seen at CoRSU rehabilitation hospital in Kisubi while the arguments continued.

Public reports from 2012 stop at the appeal. They do not record a later reconstruction that restored walking, nor a confirmed amputation. What they record is a child whose lymphatic channels failed early, whose bones broke under the weight of trapped fluid, and whose family and a rural doctor asked the world for a plan before the infection or the knife took the legs.

Lymphoedema and filarial elephantiasis are not rare in parts of East Africa. A child whose legs outgrow his body, who cannot sit without pain and who may also have a necrotising infection, is rare enough that a village hospital cannot settle on one name for the disease. The photographs remain: a small face above two enormous limbs, a doctor’s hand on a shoulder, a father who could not buy an early clinic visit.

Sources

Daily Mirror and Daily Mail features on Vincent Oketch, May 2012

NTV Uganda report from CoRSU hospital, Kisubi

Dr Isaac Osire / EDYAC appeal for international advice

News Ghana and Bulawayo24 summaries of the conflicting Kampala diagnoses

Barcroft photographs of Vincent with Dr Osire and his father Tito Opoya