Jenne Achola, a resident of Bongolaku village in Labongo Akwang Sub-county, Kitgum District is among parents in the region who aren’t happy with what they perceive as government reluctance to revitalize treatment of nodding syndrome patients.
Michael Odur, a resident of Labworomor village in Akwang, says that caring for the children affected by the nodding condition since the closure of the treatment centers has become an uphill task for him and the entire family due to resource constraints.
Pader District Vector Control Officer William Sam Oyet called for urgent government intervention citing that the flies are reported to be responsible for the outbreak of nodding syndrome. Although the real cause of nodding syndrome is not yet known, the Ministry of Health through several scientific research conducted attributes its cause to black flies that are dominant along the Aswa River.
Nodding syndrome, according to the World Health Organisation, affects children between the ages of 5 and 15 years old, causing progressive cognitive dysfunction, neurological deterioration, stunted growth and a characteristic nodding of the head. Despite numerous and extensive investigations, very little is known about the cause of the disease.
Hope for Humans, the first comprehensive Care Center for sufferers of Nodding Syndrome was established in 2012. It became a safe haven where children with nodding syndrome received medical care, rehabilitation, nutritious meals, special education, and personal hygiene support.
A report by the Parliamentary committee on Gender, Labour and Social development on the nodding disease has pointed out that affected children are being injured as parents try to contain them from wandering due to their illness.
Ceaser Okot, the coordinator Hope for Humans says the tool also allows for checking the weight of the child, recording of seizure frequencies, the height of the child and how the affected children relate to each other.
The director of Gulu referral hospital has appealed to the government and donors to help in establishing a special needs education centre for children with nodding syndrome. Dr. Nathan Onyachi told Members of Parliament in Gulu that there are currently only 30 children with nodding syndrome who are pursuing primary education under the normal system.