Sitting on the veranda of a tiny hut, Sunday Layet bows her head and stares at one spot on the ground for at least five minutes.
She then raises her head, slowly bends the neck towards her left shoulder and looks to the skies for another five or so minutes. Then the head involuntarily falls again, this time with saliva dripping out of her parted lips on to her lap, and she starts nodding like a child overpowered by sleep.
Layet is not sleepy; she suffers from severe conditions of nodding syndrome. She is 18 years old but looks like she just celebrated her tenth birthday.
For six years, Layet has spent every second of her life like this: gazing, nodding, wandering or tied to a tree. She cannot play, go to school, date… she just cannot do anything.
As if that is not punishing enough, her little sister suffers from the same disease and their mother Santina Apoto is blind!
Layet is one of 15 children suffering from nodding disease in Augustine Ocitti’s household in Okidi Central in Labongo Amida sub-country of Kitgum district.
According to Lam Kanuela, a woman councilor from Amida, this sub-county has the biggest concentration of nodding syndrome patients in the country.
Okidi Central alone has 56 registered cases of nodding disease of the more than 270 cases in the district. With such a high prevalence, it is not surprising that men like Ocitti sire as many children as possible.
Ocitti has 32 children from five wives, and eight of these have nodding syndrome. Since the disease broke out in 2009, at least every family in this sub-county has had a case of nodding syndrome – an ailment with no known cure.
The stricken children live hopeless and helpless lives. While many have less-severe symptoms, one of Ocitti’s wives Josephine Aloyo says they can each get at least four attacks a day.
“So, you cannot risk sending them to the well because mere looking into water stimulates an attack and many have drowned before,” she says.
They have the same phobia against fire. As a result, these children just have to permanently stay at home. When their parents and caretakers go out to the gardens, they are left locked inside houses.
But since most of the affected children are teenage girls, this exposes them to rapists.
“Defilers watch from a distance and when parents leave home, they pounce on these helpless souls and shatter their only remaining source of pride – their virginity,” Kanuela says.
Many have been defiled and infected with HIV/Aids. In 2014, then Kitgum woman MP Beatrice Anywar said at least 50 girls with nodding syndrome had been raped and 35 impregnated.
Kanuela says this is still the case. In most cases, the perpetrators are never found since many of these children are too sick to remember their tormentors.
Even when they are caught, the damage they leave is life-long.
“We once had a case of a husband who married a woman that had a teenage daughter with nodding disease. When this woman left the daughter with the man to go and fetch water, the man raped the girl and impregnated her on top of infecting her with HIV/Aids,” Kanuela adds.
“The man was arrested and imprisoned but he permanently damaged the lives of these two women.”
Ocitti’s wife Aloyo says they have now devised a way of watching the children in turns to ensure they are not left home alone.
DEMONS OR DISEASE?
Aloyo says children with less-severe conditions can chat, laugh and play between attacks. Some even go to school, although they forget everything they are taught the moment the teacher leaves class.
But every attack is devastating. Some isolate themselves, lose the ability to speak and start wandering around the village. Many fall into water bodies and drown while others tumble into fire. As a result, they have to be restricted and locked up or tied to trees.
To manage the attacks, parents get regular syndromic medicine from Kitgum hospital. But those at Layet’s level do not have this luxury. They are permanently sick.
Ocitti has not lost a child to this disease, but the emotional and financial toll is unbearable.
“The most traumatizing part is that there is no end in sight,” he says.
Gracing Kitgum municipality MP Beatrice Anywar’s parliamentary victory party early this year, President Museveni visited some of the affected communities and declared that the disease had been contained.
Ocitti says when the disease first broke out eight years ago, government officials came, took samples and sick children for monitoring in Kampala laboratories, but no one has heard from them since. Eight years later, there is no medicine or even emotional therapy.
“The victims are on their own. They are avoided by members of the public. Others are neglected by relatives. In some circles, these children are thought to be possessed by demons,” says David Mukidi, a local leader.
A laboratory was set up at Kitgum hospital last year to conduct further research on this mysterious disease but there has been no breakthrough.
Residents now rely on help from various non-governmental organisations that occasionally distribute food items to these children. But this is unsustainable considering the increasing numbers of cases and the fact that a cure is not forthcoming.
But for Layet, nothing means anything anymore – she is just sick.
She can smile back at those that smile at her and hide her face from scornful spectators. She can stand and move when asked to, and even responds when I wave goodbye to her.
That is her life!