Each child’s nodding head eats at Ocitti’s pride

Gulu

He was a proud man, because he ‘had it all’ – four beautiful women and 25 children. Animals, domestic birds and a fertile land to call his own. Augustino Ocitti was the envy of many. With his head up in the air, Okidi Village bowed at his feet – he was their village chairman for a decade. His peers regarded him as “the true definition of an Acholi man.”

But as I enter Ocitti’s expansive compound, a sore silence welcomes me. I find him seated under a mango tree surrounded by a group of unsettled children. He glances up occasionally to check on them, but his head is bowed most of the time.

The pride he once carried on his shoulders has faded and is now replaced by the weight of seeing seven of his children nodding helplessly because of a disease he has no clue about.

His 12-year-old son, Lawrence Kabila, is the most affected by the ailment. At his age, he can be mistaken for an eight-year-old. The disease has stunted him. Kabila’s skin peels off effortlessly as he scratches himself. His sticky legs appear too weak to support his head and chest which appears heavily swollen.

When he gets up to walk, his movement is a stagger and he slumps back down before long. Without a word, he looks up to his father, who helps him chase away flies that are crowding at saliva-dripping from his mouth.

Lilly Lamunu, another of Ocitti’s child, comes limping to his father. She had earlier sneaked after her sisters to collect grass for thatching a hut. Her worried father had sent an elder son after them, fearing that she may never return. As she sits next to her father, flies rush to her left toes, which got burnt two weeks ago. She was in the kitchen when she got a seizure and fell into the fire.

Hapless children
She offers her frail hands in greeting and smiles. Lamunu abandoned school in Primary Three. “If I go to school, it (nodding disease) makes me fall,” she says “I no longer go to school.”

At 14, Lamunu speaks like a child still trying to learn how to talk. Every word she utters comes out with a painful effort. Ocitti has never understood why his daughter-once jolly and active, has now become helpless. He even gets more frustrated because he cannot do anything to change the condition of his seven sick children.

The epilepsy drugs that he gets from Okidi Health Centre III, does not help much except for reducing nodding for the first two days of administering it. Sometimes he wonders if he should give the children the medication, or just watch and hope that real treatment for the ailment is got.

After leaving Okidi IDP camp in 2006, Ocitti had plans of reviving his home - ‘killed’ by two decades of atrocities by the LRA rebels. He had plans of tilling land, educating and raising healthy children. But that plan was altered and shattered by the nodding disease.

He has now become a ‘prisoner’ in his own home, watching over his sick children from dawn till sunset. He has to ensure none of them leaves his sight because they can fall into water or fire when seizures or nodding strikes.

The death of his daughter Joyce Labol on May 1, 2009 is still fresh on his mind. She was the first to get the nodding disease from Okidi IDP camp in 2006. When the family returned home in October 2006, death started lurking in the homestead. Seven of his children started getting nodding disease, one after another and Labol died of it.

Labol had on the fateful day followed her colleague to wash clothes at a well. When her friend later moved a few distance to spread the clothes on the grass, Labol walked to the water source and began fetching water. But before she could complete the task, a seizure struck, throwing her into the water. No sound escaped from her mouth to raise an alarm for help. She drowned.

Safety amid fears
Her siblings, returning minutes later, looked around only to see Labol lying lifeless. That incident traumatised the family, who get reminded every time they go to fetch water from that same ‘death well’.

The lone borehole that serves a population of about 1,375 people, is three kilometers away, forcing the family to use the unsafe water from the well for domestic use.

The fear of losing another child to water or fire is the reason Ocitti dropped all responsibilities to ensure his children are safe. “It is not easy taking care of them, but I would rather have them sick than dead. I can’t afford to lose another one,” says Ocitti.

His wives are now the bread winners, going to the garden or selling a few commodities, to ensure there is food on the table every day. But even as the women struggle to ensure there is food for the family, the sick children dread every meal time. The sight of food sparks bouts of nodding and seizures.

Meal time at Ocitti’s home is no longer a moment of re-union. Previously, all children would sit in a circle under the shade or at the fireplace, women and men in their own circles. That has changed.

When I knock on Christine Aya’s door, she is seated in a corner of her grass thatched hut, eating with her last born child. Two of her children are seated with their father, nodding away under the shade. She has to eat first before she can join her husband Ocitti in ensuring the sick children eat.

The drama that comes with meal time can only be handled by two or more adults. When food is finally served, the children stare at the dish of pigeon peas and millet bread with expressionless faces. Their hands are already washed but none makes an effort to eat except for Milly Adyero, 12. She takes the first bite, chews it with slow and restrained effort. When it comes to swallowing, she stretches her neck and makes a painful effort of taking the food down her sore throat.

That continues for about five minutes before she starts to nod. Some of her siblings had started nodding before even tasting the food, while Kabila gets his third seizure of the day.

Ocitti and Aya hold the children and feed them one after another, when the nodding subsides. “We have to feed them, lest they become even more malnourished,” says Aya, who gets teary every time she recalls how her daughter Labol died. “She was my eldest daughter, only 13 but the disease took her life away. She had started behaving like a mad person,” she says.

Labol would urinate on herself, would not respond when talked and as getting more frequent seizures. “When she starts nodding and you speak to her, she does not respond, even if you pinch her, she does not show any sign of pain,” says Aya of her daughter’s last days. “If you are not used to witnessing the seizure attacks, you can flee in fear, but we are now used…,” she adds, explaining the condition of her two sick children.

Mr Ocitti, however, says, on top of the nodding disease, Labol could have been possessed by spirits of those killed during the war by the LRA. “Sometimes she would speak to herself and say ‘wait for me, I am coming’ or ‘am I the one who killed you, am I?” he narrates, adding that even in her sleep, Labol would sometimes scream, saying some people want to take her away.

Mystery
The mystery surrounding the cause of the disease is not peculiar to Ocitti and his family. Families of over 3,000 children affected by nodding disease in northern Uganda are in the dark, asking themselves unanswered questions of what the disease is.

Some think it is contagious and have stopped sending their children to school or to church, while others say it could be a curse by spirits of those killed during the war.

Research by Centres for Disease Control and WHO into the cause of the disease has still not yielded any fruit. The Ministry of Health recently opened treatment centres in affected districts of Kitgum, Lamwo and Pader for screening and management of the nodding symptoms but no launch has been made.

As Parents wait for their health workers to be trained in managing the disease symptoms, and the treatment centres to be fully equipped, parents can for now wait and hope that they children’s lives are saved- somehow.

There is so far no known cure for the Nodding Disease Syndrome. Treatment being given currently is only to lessen pain and only treats the signs presented by the patient as the end result is known to be death.

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