Uganda’s only treatment center closes, leaving nodding syndrome patients without care

Simon Peter Ojok helps 23-year-old Nill Kidega walk to receive his evening dose of anticonvulsants at the Hope for Humans care center in Uganda’s Omoro District. Since 2012, Hope for Humans has housed and treated almost 200 children with nodding syndrome in Northern Uganda. The disease causes stunted growth and mental and physical deterioration in children as young as 2.

Story and photos by Adam Warner

In January, the only care center in Uganda for people suffering from nodding syndrome closed its doors because it lacked funding.

Since 2012, Hope for Humans provided life-saving treatment for children with nodding syndrome in the Omoro District. The disease causes stunted growth, mental degradation and physical deterioration in children as young as two.  The center had treated more than 200 children before closing last month.

The center’s 29 patients, all younger than 25, returned home to be cared for by their parents.

Among these children were sisters Agnes and Brenda Odong.

On Feb. 3, 15-year-old Agnes died during a seizure at her home. She was the first of two children who died since the care center’s closure. According to the local health department, the health of more than half of the center’s recent patients has worsened without treatment.

Fifteen-year-old Agnes and 14-year-old Brenda Odong sit for a portrait with their father, Nixon, at the Hope for Humans care center. Since the center closed, there is no treatment in the area for nodding syndrome and the health of many children has deteriorated. Brenda’s condition is stable, but Agnes died from a seizure on Feb. 3, 2018.

Apiyo Janet, a caretaker at Hope for Humans, wipes dirt off the legs of Lalam Vicky, a child at the center with nodding syndrome. Like Vicky, most children with nodding syndrome come from poor farming families that can’t afford to treat the illness.

Caretakers Simon Peter Ojok, left, and Nixon Odong comfort Ojok Jimmy. Hope for Humans closed its doors in January 2018 due to administrative corruption and lack of funding. All children were sent home to be cared for by their parents.

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