As you enter one of the wards at Atanga Health Centre III in Pader District, there lays a three-week-old baby boy, named Sunday Lubangakene, mothered by a minor. The mother, who is also suffering from nodding disease, was sexually abused at 14 years after her mother left her alone at home while she attended to the garden. 

The victim’s mother, Betty Akullu, a widow, said that she did not know what had happened to her daughter, thinking it could have been one of the effects of the nodding syndrome. “To my dismay, I realised that she was pregnant at five months and I had to put on hold the garden work and take care of her until she gave birth,” Akullu said. 

“Throughout her pregnancy, my daughter did not have any problem apart from the complications of the nodding syndrome, that kept disturbing her all the time since by that time she had not yet started the medication,” she added. 

The child’s mother had a normal birth from home, with the help of a traditional birth attendant. However, the grandmother to the child says that her daughter does not know that the baby is hers as she keeps on refusing to breast feed him. This has challenged her to seek other means of feeding the baby. “I am asking for help from well-wishers to help me raise my grandchild because my daughter cannot breast feed him at the state she is in. At home I have left other four children and there is also nobody to attend to them,” she said. 

The in-charge of Atanga Health Centre, Mr. David Nokrach, said that the child’s mother was identified by health workers in outreach programmes targeting victims of the nodding disease unable to reach the treatment centres. “The baby is healthy according to the medical examination and the child mother is also responding to the medication and soon she will be discharged,” Mr Nokorach said. 

Children, especially those with the nodding syndrome are in danger of being abused because they are often left alone shackled to house structures; furthermore, the syndrome weakens them, especially those who have not been able to get medication for the seizure attacks. 

Whilst visiting Atanga Nodding Syndrome Centre recently, the Minister for Information and National Guidance, Ms Mary Karoro Okurut, called upon the police to track down those who abuse the girls, by taking advantage of their vulnerability. “This is double tragedy. Why would a sensible human being abuse such a young girl? Instead of helping them, they are instead abusing them; Police should investigate the matter so that the offenders are brought to book,” Ms Okurut said. 

It is believed that another victim who was also sexually abused still carries his pregnancy. 

Some communities in the region still think that their children are affected by epilepsy and continue to keep them indoors for fear of being stigmatised by their communities. 

Nodding disease and epilepsy present similar symptoms-seizures, fits and mental retardation.  Some parents lock their suffering children in the house, while others tie them on trees or house structures to stop them from moving around and causing harm to themselves. 

Children with nodding syndrome will remain on medication for the rest of their lives to control the seizures and other effects. Medics will continue to research the cause of the disease and the manner in which it spreads.  

Meanwhile, the LCV Chairperson for Pader district, Mr. Alfred Akena, has appealed to the government and Ministry of Health to support district task forces who are carrying out outreach work in creating awareness on the syndrome. 

In an interview with Acholi Times, Akena noted that when the government said that it was setting up centres to treat children affected by the disease, NGOs that were facilitating the task force pulled out their support. However, since then the government has not been able to replace them. 

“We were creating awareness on the syndrome from village level, telling communities to make the use of the health centres in accessing treatment but since the government came out interventions have been minimal which has left many affected children unreachable,” he said.

“Communities still think that its epilepsy that is affecting their children, and you know when a family is affected with epilepsy, it’s mocked which has resulted in many shunning health facilities for fear of being stigmatised,” added Akena. 

A medical officer at Atanga nodding disease centre, Mr Richard Ogwal, noted that that they are often challenged parents questioning whether their children will ever get back on their feet and what is causing the disease. 

“We are asked all the time by the parents and the guardians of the victims on what is the real cause of the syndrome, specialists should speed up with the finding on the root cause of the syndrome,” he said. 

Ms Alice Lagum, a parent to two children affected by the syndrome, said that it is pointless taking the children to the centres because doctors have also failed to establish the real cause of the epidemic. 

“We hoped to be helped by the doctors in establishing the real cause, what is the use of the centres she asked? May be the syndrome is within the communities so we may need to relocate to safer areas but we are not told anything.”

District task forces stopped their mobilization in March this year when the government said that it was going to intervene, but the government has failed to provide them with any financial support. The task forces are made up of LCV Councillors, Community Development Officers, and LC1s up to LC11 chairpersons.

So far the government has established treatment centres at Atanga in Pader district, Palabek-Gem in Lamwo district, and Kitgum hospital in Kitgum district with over 20 outreach centres in Acholi sub region to address the issue; however, communities say the centres are ill equipped and lack basic facilities.