OMORO – Unsupported anymore by the government or Non-Governmental Organizations (NGOs), parents of children battling the debilitating Nodding Syndrome in the northern district of Omoro have turned to saving groups to support their sick children.
Nodding syndrome, according to the World Health Organization (WHO), is a devastating neurological disorder of uncertain etiology described in African children. It was first documented in Tanzania in the 1960s, then later in South Sudan in the 1990s and in Northern Uganda in 2007.
About 33 women are currently leaning on Dii-Cwinyi Luc-Luc SACCO located in Te-Olam village, Odek Sub County in Omoro District to support their children.
Each member has between three to four children suffering from Nodding Syndrome, according to Grace Akello Layel, the chairperson of Dii-Cwinyi Luc-Luc SACCO.
Layel told theCooperator that members are growing soya beans and beans on a small scale to support their children.
“We also engage in petty trade in vegetables and sell locally brewed alcohol to get money to save every week,” she said, adding that members borrow from their pool of savings.
Layel however, said they need oxen and ox-ploughs to increase their productivity.
“These children need good feeding and medical care. Sometimes, when they fall sick, it becomes hard for members to keep saving because they have little money,” Layel said.
The group is also working to ensure that each member puts an iron sheet roof on her house to avoid unnecessary fires lit by their children in grass thatched huts.
“We were given Shs 700,000 by African Women Rising, an NGO, which we have loaned out to members and managed to generate Shs 5 million. We want to buy at least 10 iron sheets for each member to put a roof on the house,” she said.
Even in the face of the disruptive Covid-19 pandemic in 2020, the group, which started in 2018, managed to save up to Shs 13.9 million last year.
Jimmy Kakamon, the LC-1 chairperson of Te-olam village, applauded the women for taking care of their children.
Okello Douglas Peter Okao, the LC-V chairperson of Omoro District, said the district has written to the Office of the Prime Minister (OPM) asking for 283 sets of oxen and ox-ploughs to help households affected by the Nodding Syndrome.
“We want the families affected by the Nodding Syndrome to be supported by oxen and ox-ploughs but the office of the OPM is yet to respond,” Okao said.
He said the district received 360 pieces of iron sheets last week from the OPM, which will be distributed to 18 most vulnerable families affected by the disease.
Nodding Syndrome has affected an estimated 1,834 children in Northern Uganda.
In 2017, Hope for Humans Centre, a Nodding Syndrome treatment center in Akoyo village, Odek Sub County, was closed due to lack of funds.
It was the only facility offering treatment and education to hundreds of children suffering from the illness – which affects the brain and the central nervous system of underage boys and girls, between the ages of five to 15.
The center was founded by Dr Suzan Gazda, an American neurologist and her friends in 2012.
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