HALF A MILLION CHILDREN AND RISING AS VICTIMS OF NODDING SYNDROME, A UNIQUE NEUROLOGICAL DISORDER IN POST-WAR NORTHERN UGANDA

By Livingstone Okumu Langol

Over 5,319 children affected by the nodding syndrome in Northern Uganda, are facing dire situations as food rations and medication have not reached them for now over a year. The diseases is a phenomenon of all districts in the Acholi sub-region comprising Omoro, Pader, Kitgum, Lamwo, Agago, Gulu and Nwoya districts.
A 2022 statistics by Archbishop John Baptist Odama Care Centre, Kitgum (AJBOCCK) indicate that the number of the syndrome’s victims per district are as follows: Kitgum, 1,336; Lamwo; 316, Amuru, 66; Pader 2,967; Omoro 238; Nwoya 60; Gulu 336 with the total morphing up to 5,319. There is no authenticated figure for 2023 and 2024 but the number of cases are known to be on the rise as advocacy, medication, care and media reporting on the cases slow down
The affected children have turned their wrath on their parents, torching grass-thatched huts and meting out serious physical and psychological harm on the parents. The children exhibit aggression mainly directed against the helpless parents who are caught up between working in their gardens and taking care of the ill children. As a consequence, the parents are both psychologically and economically distressed, they cannot grow enough food for their family, yet one of things that is known to assuage the children’s situation is access to balanced diet. With the government and civil society support almost gone, both parents and children are now victims of the debilitating illness.
To make matters worse, the emaciated children who are victims of the syndrome shake and nod uncontrollably at the mere sight of food and this requires a lot of tact from the parents to enable them to at least swallow some of the food, that they seriously require towards their improvement.
One parent of a nodding syndrome case cried out. “If government can feed millions of prisoners, why can’t it take the responsibility for the small numbers of the nodding syndrome cases and their parents.”
There is also evidence that strangely, the children who have turned into adolescents seem to have high libido. The result is, the minors have not been spared reproduction. Some of them have gone ahead to have children of their own, adding to the burden of caring for both the children and their off-springs.
Black Star News has learned that in the last one month 18 new cases have been registered in Tumangur Village, Lamit Parish, Akwang Sub-county, Kitgum District. In one case, a parent has up to seven children, all affected by the syndrome.
KITGUM DISTRICT-THURSDAY FEBRUARY 4, 2024.
When Black Star News visited Tumangur village in Kitgum on February 4, 2024, it recorded the following history.
A village health team worker, Joe Otto discovered nodding syndrome from his three kids in 1998, and after reporting the neurological condition to Kitgum Hospital, his report was rejected and rubbished. Ten years later, World Health Organization (WHO) proved that his narrative was accurate.
Otto, the first whistle blower had reported that when food is brought to the children, they begin to nod their heads, often collapse and abandon eating. Joe Otto’s three children have since passed on, the last one, a girl, died in 2023, aged 27 years old.
Otto disclosed that indeed when he reported about his children’s condition to Kitgum-based doctors in 1998, they were disinterested in his story but in 2007, they confirmed that there were new neurological conditions that is affecting children aged 5 to 15 years old.
“I was really helpless seeing my only three children dying. Today, there is a new infection of nodding syndrome that has affected 18 people including a three-year-old daughter of a 50-year old Ouma Moses. Tumangur Village alone has over 468 cases of nodding syndrome,” claimed Otto.
He said 85 boys and girls in Tumangur Village alone have since borne 146 children, some are neonates, one is 9-year-old and in Primary 4 in Tumangur P7 School. He reported that the village has so far lost 94 children to the nodding syndrome.
Otto told the six MPs of Acholi Parliamentary Group, sitting under a big mango tree in Tumangur Village, including Chwa West legislator, Okin Ojara P.P., that they were insensitive. He said in 2020 when they (MPs) came to distribute maize flour, one of them told the people that they were tired of the nodding syndrome condition.
Otto questioned the integrity of the Acholi Members of Parliament. He said, “ No wonder now you are here telling us that you want to know the condition of nodding syndrome since the 2026 presidential and parliamentary polls are near. “We are tired of people who just come here to write projects to get money in the name of the nodding syndrome.”
Abalo Vicky, a mother of a nodding syndrome victim decries that one of her sick daughters was defiled by a nursery school teacher, and the teacher is on the run.
Amito Alice, a 40 years old mother of a nodding syndrome girl-child, claimed that her daughter, a victim of the neurological condition was repeatedly raped and produced two kids whose paternity remain unknown.
Tumangur village was named in 1959 by the first Labongo clan settler who came from Kitgum first to settle in the place. Tumangur literally means, it is better the beasts eat us. The place was infested by wildlife including lions.
From 1986, till 2006, Tumangur was the epicentre of battles fought between different groups of rebels and the Uganda People’s Defence Forces. It was a fierce battle ground for the Uganda People’s Democratic Army (UPDA) as well as the Lord’s Resistance Army (LRA) against the government forces.
Santa Okot, the member of Parliament for Aruu North who out-competed men and the only legislator under the opposition People’s Progressive Party (P.P.P.) minced no words when referring to lack of leadership in the Government in tackling the nodding syndrome.
“Now you have been voting for President Museveni, and yet when the President Museveni is present here in Tumangur, instead of you crying before him, you only jubilantly praise him when your children are suffering and dying.”
“We are tired of you not voting wisely. Look! all these members of the ruling party who are legislators in this area are not here with us. Kitgum Women MP Lillian Aber Lillian, Hillary Onek Obaloker, Lamwo MP and Nancy Achora, Lamwo Women MP are all not here to listen to your plight.”
“When President Museveni comes to seek for votes from you, the parents of children afflicted by the nodding syndrome, you do not cry, all you do is praise him, when your children are mooing like cows, yearning for food. “You are now crying before us,” Santa Okot told the parents off.
Okin Ojara P.P., Chwa West MP and Okot John Amos, the MP for Agago North, Betty Aol Ocan the Women MP for Gulu City, Laker Sharon  Balmoi, the Women MP for Gulu District and Gilbert Olanya the MP for Kilak South, all resolved to petition the speaker of Uganda Parliament to re-allocate budget for the nodding syndrome. They said all the nodding syndrome children should be transferred to health facilities in order not to subject their parents to a lot of trauma.
Goodman Oloya, the Coordinator for the Archbishop John Baptist Odama Care Centre Kitgum (AJBOCCK) voiced his concern that there are immediate needs of the organization, among others are: the need to be supported with funds to establish one care centre for male nodding syndrome victims at Omoro District, particularly, Aromo Wang Lobo Hope Caring Centre. He further voiced the need for funds to help in the recruitment of additional personnel, psychiatric clinical officers, one enrolled psychiatric nurse, and two social workers to support the community mental outreach.
Oloya called for the establishment of child centres supported by UN bodies such as UNICEF, and civil society organisations such as Save The Children Fund, OXFAM and all other NGOs working in Northern Uganda. He said all of them should be part of rehabilitation of the nodding syndrome victims.
“I blame Gulu University that should have been the centre for community transformation for being a very marginal party to this debilitating condition that is affecting the community around them. However, I also cherish the personal contribution of Professor David Kitara Lagoro who is part of the University for his professionalism in disseminating researched information about the syndrome, but what is the University at large doing?” Oloya questioned.