Recently the story of forgotten children dying from nodding syndrome in northern Uganda was reported in the media. In the last few months since the NGO-run nodding disease care centre in Gulu closed down due to lack of funds, six children have died.
Nodding syndrome was first documented in Tanzania in 1960, Sudan in 1990 and northern Uganda in 2007. According to the World Health Organization (WHO) nodding syndrome has no cure and affects children aged five to 15 years, causing progressive cognitive dysfunction, neurological deterioration, stunted growth and characteristic nodding of the head.
In 2015, the Ministry of Health (MoH) permanent secretary, Dr Asuman Lukwago, issued a statement reassuring the public that nodding syndrome in northern Uganda was under control with no new reported cases.
Since then, there have been new cases and children are dying from this mysterious disease. Many people were outraged at the recent death of young vulnerable children. Insistently and surprisingly, MoH has been silent without as much as making a statement on the recent deaths. It is as though MoH is determined to put the NRM government under the spotlight and make sure that they are remembered for the wrong reasons, ignoring the death of disabled children.
By coincidence on the day the nodding syndrome story was featured in the media and the report showed how nodding syndrome children are living in dire poverty, by contrast in Kiboga the NRM government was in high gear celebrations. As food was served, the loud music captivated attention and drew crowds while party leaders danced with laughter and jubilation. The party leadership was celebrating their recent age limit amendment win, while eating multi-layered cake.
Meanwhile, the children suffering from nodding syndrome, who need constant supervision, were being tied to trees for their own protection as their parents went off to the gardens to dig and look for food.
Ordinarily, government celebrations are not to be frowned upon, after 30 years of being in power. The ruling party has spearheaded some significant achievements that are difficult to deny: the ushering in of relative peace, new infrastructure and tarmac roads. It seems irrational and awkward that MoH would now want to portray the government in negative light by ignoring the death of children.
In 2009, the international community was intrigued by nodding syndrome and a study was conducted jointly by Centers for Disease Control and Prevention (CDC), WHO, Mulago National Referral Hospital and Makerere University.
The study findings gave specific recommendation that has been gathering dust, ignored by MoH for unknown reasons. Some of the study’s recommendations included building capacity in health systems, training health workers in early nodding syndrome detection, securing specialised care and building treatment centres. According to the MoH website, their mission is to provide public health interventions and implementation in accordance with developed guidelines for reproductive health, child health and nutrition.
If only MoH had implemented the statement, it could have prevented the deaths of children from nodding syndrome. The international community interest in nodding syndrome research was a measure of protecting their own government’s interests, legacies, and protecting their children by understanding more about the disease.
In Uganda the reality is that MoH is determined to make sure that NRM goes down in history as a government that ignored countless deaths of innocent children suffering from nodding syndrome.
Ms Victoria Nyeko is a media commentator.