In Uganda, closing care center leaves children to ravages of nodding syndrome

In February 2017, Nixon Odong brought his two teenage daughters, Brenda and Agnes, to the Hope for Humans care center in northern Uganda. This is Uganda’s only effective care center for nodding syndrome, a disease that causes stunted growth, physical deterioration and mental dysfunction among children ages five to 15. Many children arrive unconscious and can walk within months.

The illness became an epidemic in Uganda’s north during the country’s long civil war against the Lord’s Resistance Army. It spread quickly through the internally displaced persons camps set up by the Ugandan government to shield civilians and house refugees from the conflict. It disappeared just as quickly, with no cases appearing in children born since the camps emptied in 2008. In 2012, the Ugandan government reported 3,000 cases of nodding syndrome.

For most Ugandan children, nodding syndrome is a death sentence. No one knows what causes it and there is no cure. Treatment to combat the disease consists of anticonvulsants and three meals a day, but many parents in Uganda’s impoverished north can’t afford it. Without proper feeding, the children slowly deteriorate over years before dying.

Like other parents, Nixon Odong couldn’t afford to treat his daughters. To save their lives, he brought them to Hope for Humans, and soon after began working as a caretaker of the boys there. Along with three other caretakers, he feeds, bathes and cares for the children as they heal. Many children were unconscious for years and can’t remember their parents, so they see their caretakers as parents.

But soon, Nixon will have to bring his daughters home. In January 2018, the Hope for Humans care center will close because of administrative corruption and lack of funding. All children will be sent home to be cared for by their parents. No effective nodding syndrome care center will remain in Uganda.

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