Africa-Press – Uganda. Local communities across Acholi Sub-region have started mobilising funds and food items to supporting more than 5,000 patients of nodding syndrome disease.
At the weekend, the 3rd Deputy Prime Minister, Ms Rukia Nakadama, graced the Irene Gleeson Charity Walk 2022 in Kitgum Town during which money and food worth Shs186m was raised to support the patients.
The walk, organised by the Irene Gleeson Foundation (IGF), a charity organisation operating in Kitgum District, also raised awareness about the disiease.
Dr John Paul Kiffasi, the IGF executive director, told Daily Monitor that the funds and food will be channeled to at least 1,000 families of the victims in Kitgum District.
“We intend to give each family 25kgs of posho, 10kgs of rice, a few kilogrammes of sugar, bars of soap, salt, and beans because mothers and fathers of these children spend all their time looking after them,” Dr Kiffasi said.
“People collected funds from all over Acholi Sub-region, including those in Kampala and other parts of the country. This is just the beginning, we shall continue to mount the same efforts until the condition of these victims improve,” Dr Kiffasi added.
Mr David Okello, the Kampala chapter chairperson, said the patients are suffering.
“These children have been forgotten by both government and the society and that is why we planned for the walk, not just to raise the food, but most importantly to reawaken all the key stakeholders,” Mr Okello said.
“It is a shame that government allocated Shs5m for nodding syndrome for more that 4,000 victims for an entire financial year,” Mr Okello said.
Daily Monitor was unable to independently verify the claim.
Meanwhile, the livelihoods of families of the victims of the disease remain severely ravaged by their inability to carry out productive activities.
“For the parents and families of these victims to be able to do income-generating activities, they are forced to tie these children with ropes because they fear that they can drown or get burnt,” Mr Obol Arwai, the Kitgum chairperson, said.
Mr Okello challenged the government to deliberately donate relief food to the affected families.
Research
“Makerere University has money which is pumped into research, why don’t they refocus a few of those initiatives here even if it means spending a year or two. Let them investigate the cause of the disease,” he added.
Mr Richard Ocitti, the chairperson of Bongo-lakur village, said his area has more than 300 patients living with the condition.
“Parents have given up on these victims, everyone here is now tired of unfulfilled government promises.”
Mr Patrick Polly Okin, the Chua West MP, blamed the government for reluctance in conducting research.
“We know the children are hungry and so they need food, medicine because they are sick, but these are obvious interventions, why should it take all these years for them not to get us concrete results?”Mr Okin said.
Government response
Ms Nakadama told the leaders and family of the victims that the government was still focused on finding a solution.
“It is God’s plan that we have not yet found the cause of this disease. We have a disease here, HIV/Aids, it came, up to now, we have never found drugs for such a disease, not that we don’t want.”
She also ordered the immediate arrest and prosecution of men found to be defiling some victims and their parents.
Abandoned centre
Before gracing the walk, Ms Nakadama visited a dilapidated and abandoned Tumangu nodding syndrome treatment centre that President Museveni commissioned in 2017 at Bongo-lakur Village, Tumangu, Labongo Akwang Sub-county in Kitgum District.
While interacting with the families of the victims, Ms Nakadama was shocked to learn that some female victims had been raped while others died due to lack of treatment.
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