Mothers of Children Affected by Nodding Syndrome

In the scorching mid-morning sun, we were ushered to Okidi by the beautiful Acholi welcoming song chwin wa tin yom (we are happy today) with the wind whistling through the mango tree and women wiggling to the sound of the drums. We joined in by clapping and for a moment, you would not tell that some of the women were the mothers of the children stricken by the Nodding Syndrome Disease as they looked too young. As they treated us to a warm reception,  behind the huge tree away from the dancing arena the malnourished children lay on the laps of the mothers who had not joined in the dance. Amongst them was also a set of twins whose parents I later learnt died in the Kony war, rested on the laps of their grandmother. I was given papyrus mat to sit on while my hosts sat on the yellowing grass.

Okidi is a village in Kitgum Municipality. And on this particular occasion, I had visited as internship student to sensitize the community on the Nodding Syndrome Disease. 

During the engagement, it was clear that in the community, the causes of the disease are still shrouded in superstitious mystery. 

"We the people of Acholi believe that this disease is caused by the sound of the gun or its powder" said one of the women. 

Another woman protested, saying, "no! The disease is either caused by witchcraft or the evil spirits of those who died in the war. Their blood wails and their souls wander finding rest in our children who are innocent victims of the cruelty of this world."

The causes of the disease are still unknown and no wonder the doctor who took us through pre-community entrance orientation warned I and other students on internship of the many existing theories that are out there on the causes of this disease. 

After the meeting, I met individual families to track for the early signs and symptoms detected amongst the children before they were diagnosed with the disease. 

In all the families I visited, I observed that the children were tied to trees when not under the watch of their parents or caretakers for fear that once they got attacks, they would drown in the nearby rivers and I also noticed that all the affected children had to be fed least they doze off and fall in the food they were served.

I observed that the affected children liked eating soupy sauce (meat and fish) and rice. Therefore, I suggested to the families to grow vegetables and harvest meat or fish. This meant that they were to grow vegetables that can withstand the climatic conditions of Acholi and trade the vegetables to buy meat or fish. I also suggested that for any surplus money they get from growing the vegetables, they should buy soap to wash the children's clothes so that they are in good hygiene.

By the time I went back after about three months, some were harvesting the vegetables. It has been this way for the last five years and our dream is to make this go beyond the grow vegetables and harvest meat or fish to a group of self- reliant mothers by getting involved in other income generating projects like poultry, livestock and others.