Nodding disease victim sees light at end of tunnel

Nearly two months ago when I set my sights on Nancy Lamwaka, she looked fragile as the Nodding Disease Syndrome kept her captive (See Nodding HORROR: 12-year-old victim is tied to a tree for 13 hours everyday).

Tethered to a tree trunk for close to 13 hours, Nancy by all measures lived an inhumane life. Lamwaka is a victim of a disease that has so far defeated all health institutions of the world, including the famed Centres for Disease Control and Prevention (CDC) of the United States.

Approximately 3,000 children are affected while a few hundred have died. With the violent nodding and seizures, desperate parents prescribe virtually anything in a bid to help their children. Nancy’s father, Frank Odongokara, sought solace in the rope he used to tether his daughter but he never at one point lost hope.

Today, Nancy has registered some progress. My first impression on seeing her, on my recent second visit was her appetite. It had remarkably improved. Seated in a neat circle of siblings, she opened groundnut shells and easily ate the seeds without getting attacked by the nodding syndrome. Nancy can now walk freely under the close watch of an adult. Fingers that were once rotting are slowly healing. Her previously pale skin is also getting smooth.

Nancy’s aggressive use of sign language has also impressed her parents. She stands next to a pot if she needs drinking water, and stretches her hand for food whenever hungry.

“There is some improvement from the time Medical Team International came with some drugs for her. The doctors have been giving us a variety of drugs (tablets) to experiment.

Depending on which one works, we are going to continue like that,” said Odongkara.

“She’s still attacked by the nodding syndrome. She does not miss a day but the impact is no longer as serious as it used to be. Today, the nods may be twice a day as opposed to about 10 times [in the past],” Odongkara revealed whilst seated under the tree his daughter used to be tethered to.

Just like her husband, Grace Akumu, is happy to see positive changes in her daughter’s outlook. Akumu, however, does not want to be carried away as long as the definite cure remains a mystery.

“It really feels good to see my daughter improve, but her mental status continues to worry me. She still cannot talk, rarely responds to orders, cannot do anything constructive, and always looks disturbed. That’s why I still tie her whenever I am leaving her alone home,” Akumu said.

Part of Nancy’s progress is a result of the ministry of Health opening up three Nodding Disease treatment and screening centres in the northern Ugandan districts of Kitgum, Pader and Lamwo.


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