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Irene Gleeson Foundation Seeks Support for Children with Nodding Syndrome

For the past two years, however, the Charity Walk did not happen due to restrictions in movement that came with the COVID-19 Pandemic. This year, as they return, they will focus their energies on supporting the children who are suffering from nodding disease, according to John Paul Kiffasi, the Executive Director of the Foundation.
06 Jul 2022 12:29
A boy suffering from nodding syndrome

Audio 5

The Irene Gleeson Foundation-IGF is using its charity walk this year to raise at least 40,000 kilograms of assorted food items to support hundreds of families affected by nodding syndrome in the Acholi sub-region. 

The charity was established by Irene Gleeson, an Australian who decided to pitch camp in Kitgum at the time when the region was at the peak of the LRA war. After her death on July 21, 2013, the foundation started an Annual Charity Walk every July, to continue the projects she had started in honour of her memory.

For the past two years, however, the Charity Walk did not happen due to restrictions in movement that came with the COVID-19 Pandemic. This year, as they return, they will focus their energies on supporting the children who are suffering from nodding disease, according to John Paul Kiffasi, the Executive Director of the Foundation.

Kiffasi said that the foundation responded to a call by Archbishop John Baptist Odama and, after visiting the homes, they established that the families were starving with no food, yet the children are on medication that requires them to feed well.  

//Cue in; “We saw the…

Cue out…take the medicine.”// 

Scientists say that proper nutrition is very vital in the general improvement of children suffering from nodding syndrome. However, most families affected by nodding syndrome are impoverished and food insecure, as parents take most of their time caring for their children and are left with limited time to tend to farm or do other income-generating activities.  

Kiffasi revealed that the parents of the children suffering from nodding syndrome have lost hope because many tests have been done on the bodies of their children, but no conclusive results are taken back. The Charity Walk, he said, is aimed at restoring the lost hope in the families and also appealing to the government to open care centres to cater to those whose conditions are severe.  

//Cue in; “We are responding… 

Cue out…these care centres.”//  

Kiffasi noted that it is saddening that many have forgotten about nodding disease, adding that the Charity Walk is to ensure that the world is reminded that nodding disease still exists and to support partners who will ensure that the charity walk is sustained.  

//Cue in; “And the shocker… 

Cue out…at the Charity Walk.”//  

William Komakech, the chairperson of the Central Organising Committee of the event, who is also the RDC of Kitgum district, appealed to the community to offer any items ranging from clothes and foodstuffs. Komakech revealed that a team from Gulu will start walking to Kitgum on July 21st, for the climax of the event on July 23, 2022.  

//Cue in; “Lu Gulu bene…

Cue out…alip abiro nyo makato.”//

Komakech reiterated that Uganda had forgotten about the children suffering from nodding syndrome, and there is a need to provide special attention to them.   

//Cue in; “Lutino ni bene…

Cue out…neno ni kigwokgi.”//     

The organizers of the event have set a target to raise 25,000 kilograms of maize flour, 10,000 kilograms of beans, 1,000 bars of soap, 2,000 packets of salt, 3,000 kilograms of rice, 5,000 kilograms of soya, 1,000 kilograms of powdered milk and 2,000 kilograms of sugar.  

Komakech said they hope to distribute the food items to all the families in Kitgum, Lamwo and Omoro districts, where the burden of the disease is more prevalent. He said the items collected will be handed over to Archbishop John Odama Care centre, which has been established to care for children suffering from nodding syndrome.

//Cue in; “Cam eni biwot…

Cue out…kero tye kwede.”// 

Nodding syndrome is a condition that affects children between 5-15 years. It causes stunting in growth, progressive cognitive dysfunction, degeneration of the nerves, and involuntary nodding of the head.  

The syndrome has been afflicting children in Acholi sub-region since 2008. Several investigations have been done to ascertain the real cause of the ailment but so far, no conclusive results have been released. This dilemma remains a major concern for parents whose children are suffering from the disease.  

In December 2021, renowned Ugandan pathologist Dr Silvester Onzivua conceded that Uganda alone cannot investigate the cause of nodding syndrome without the support of other countries.