For a typical 12-year-old who should be the picture of health: physical, overly playful, full of energy, noisy and mobile, Nancy Lamwaka is the opposite. She is skinny, malnourished, hungry, profoundly retarded and immobile.

With the help of a guide, we approached a simple home composed of two huts in Labul sub-county, Pader district. One of the huts functions as the kitchen. The environment is calm, dominated by tall mango trees. The loudest noise here came from the cocks crowing a good morning to a village that has attracted world attention because of a mysterious disease yet to have a medical name, let alone explanation.

We are ushered in and given wooden seats as Michael Odongkara, Lamwaka’s father, walks back into the living hut. Moments later, he re-emerges with a girl, half naked, pale, looking tired and with her legs tied together. Her eyes are evidently dreading the day ahead.