Children with the Nodding Syndrome; and community members in Odek sub-county in Omoro District, were very pleased to receive clothes from seasoned Northern Uganda-based freelance photojournalist, Pat Robert Larubi, last week.
This is a result of Larubi’s on-line #DressMeUp social media campaign which he launched two month ago in a bid to help support these children. “The Nodding Syndrome’ disease is silently eating up the children in Pader, Kitgum, Gulu and Omoro districts,” Larubi said, adding that the war-affected Northern Uganda communities continue to experience worrying cases of the disease. “It is a horrible and permanent condition which destroys children’s lives.”
Currently, over 30 young people suffering from the deadly nodding syndrome are grounded at Hope for Humans Child (H4H), reception centre, a non-governmental organization, that exists to provide dignity, comfort, safety and hope to the children afflicted by Nodding Syndrome, and their families.
The DressMeUp donation was received by H4H’s Programmes Manager, Caesar Okot, who lauded Larubi for his initiative and taking a role in helping bring the plight of these affected children into the lime light. “You have showed us Ugandans that we can all still do something unique to help these children live decent lives,” Caesar said.
Nodding syndrome is mentally and physically disabling as it affects only children between the ages of 5 to 15 years – an energetic-would-be youthful generation grounded by the unknown illness.
The disease first emerged in the present-day South Sudan in the 1980’s and is also believed to be associated with epilepsy. Affected children experience a complete and permanent stunted growth. The growth of the brain is also stunted, leading to mental handicap.
In Pader, there are at least two to three cases per household and this is traumatizing for the family. Parents are helplessly trying to balance their daily work chores and taking care of the sick kids.
Being a peasant community ridden by poverty, some have opted for unusual actions. Those who cannot balance work and taking care of the kids and yet they have to look for food or money to take care of the family, have resorted to tying the kids on ropes as “safety measure” to stop them from wandering off or getting lost.
The very weak ones who cannot walk or even get off their death-beds have been locked up in the dark rooms where they wail and wallow in pain and pangs of hunger with no one to count on. “My two weeks encounter with the victims of the epidemic reveals that things are tough for these children – a neglected and forgotten world crisis!” Larubi lamented.
Genesis of Syndrome
On the onset of the disease, Beatrice Anywar, the Woman Member of Parliament for Kitgum Municipality, brought the problem to national attention, calling on the Government to respond to the fatal illness, but all her efforts seemingly yielded nothing!
The Nodding Disease is alleged to be associated with River Blindness, a condition that affects some 18 million people mainly in Africa, but its epileptic-like symptom is what remains to be a big mystery to the medics. What is obvious is the burden and hardships faced by children whose lives have been shattered as they wait to die.
Despite that, some families are striving to cope with the mysteries the disease, whose cure has so far eluded doctors worldwide. So far, only laboratory tests and investigations have been carried out with no substantive results – yet.