I watched three of my children nod to death - mother

As I hire a boda boda cyclist outside Cerelono Market, a cluster of busy bodies is visible, men offloading produce from vehicles, women scrambling to pick the best cabbages, tomatoes or Irish potatoes for re-sale, while others are looking through a new arrival of clothes.

Three-and-a half hours later, as I arrive in Akoyo Village, Odek Sub-county, a dull quietness welcomes me. There is minimal activity and no sight of children, who, at 11.30am, should have been up and about in the compound.

A few adults are quietly walking about, holding hoes, washing utensils or sweeping the compound. As I approach a house and ask for directions to Jackson Okot’s home, a young girl of about eight years, limps by, her face dotted with scars and bruises. I will later discover that Evelyn Akello, 13, has nodding disease, and sustained the injuries due to seizures that come with the ailment.

At Okot’s home, there is no body in sight. Two neatly built huts are next to each other. In between them are three graves, a stem of flowers near each. When the guide I have come with, announces our arrival, a middle-aged woman emerges out of a hut and so does a man, while a boy of about 11, peeps outside. Quickly, they dash back in the house to get a mat and chairs for the “visitors”.

When I introduce myself and ask if they can narrate their battle with the nodding disease, Okot looks at his wife Pauline Ajok and takes a deep breath. Ajok, who had sat with legs stretched out, now folds them. She also folds her arms around her chest as though looking for self-comfort and strength. When she starts telling the story of her three children who nodded to death, her earlier smiling face, goes blank.

The sad memories
“We were still staying at Owaca camp when it all started,” says Ajok. “It was May 2004, I don’t remember the exact date. I had just served a dish of posho and beans to the family, when Lakisa started nodding her head,” she adds.

Ajok didn’t pay much attention to the 12-year-old girl then, thinking she was just being playful. But Lakisa was not. She continued nodding for about 10 minutes.
“I told her to stop playing or we would finish the food for her,” she says, “But there was no response. She didn’t say ‘yes maa’ like she usually did when I called out her name,” Ajok says, her voice reducing to a murmur and stops talking all together.

I do not ask her any question and allow her to regain her poise. The silence that follows is even more uncomfortable as we all look at each other. I cannot help feeling uneasy for bringing back memories of pain and death to the family. But the story had to be told, so I wait.

Ajok finally looks up, smiles and resumes her narration. “Lakisa’s strange behaviour puzzled us that evening. We just stared at each other. We didn’t say anything,” says Ajok.

Ajok and her husband had prayed that night and hoped that the next morning, everything would be fine. They had hoped that Lakisa would eat her food and play with the teenage vigour she always had, but their wish was not granted.

The nodding continued for days, weeks and months and particularly when food was served. They had to look for a solution. “We could not watch and pray only, we had to look for a solution,” says Ajok.

Akoyo Village, Lamola Parish, located about 60 kilometres from Gulu town, is at the border with Pader, Lira and Oyam Districts. Business and social interactions usually take place among the communities. Ajok and her husband took advantage of the diverse community to spread the painful message of their child’s ailment with the hope that a solution could be got soon.

An unlikely remedy
When word reached the family that a herbalist had treatment for nodding disease, they dash to Loyo-ajonga Village, about 30 kilometres from Akoyo Village, to get hold of the medicine man.

Ajok was given a honey-like substance mixed with crushed leaves and instructed to burn the concoction and make Lakisa inhale the smoke. Even though Ajok and her husband did not know the contents of the concoction given to them, they pay the herbalist and dashed home to try and save their child, who had by then started getting seizures.

“He (herbalist) never told us what the medicine was. They never tell you because if you know the content, you will get it yourself and never go back to them. So they keep it a secret,” says Ajok.

When Ajok’s other children, Balam Ojok and Eunice Lanyero also start nodding, the journeys to different medicine men were intensified and hands were dipped deeper into pockets. Word going round the village was that spirits of people killed by the LRA rebels, was behind the ailment. Since Akoyo Village, found in Odek Sub-county, is where LRA leader Joseph Kony hails from, locals believed the disease was engineered by vengeful spirits.

This belief makes a visit to the hospital by residents whose children were nodding, a faint alternative. Secondly, Odek Health Centre III, the only central and fairly equipped hospital in the sub-county, is 20 kilometres away, making it difficult for the parents to travel with the children there.

“For seven years, we tried to look for medicine, for a cure for our children’s sickness,” says Ajok, “but it didn’t work; only Ojok responded well to it.”
She remains silent for about three minutes and going by the pained expression on her face, her mind seems to have travelled to the period she later describes as “days of anxiety” and “nights of sleeplessness”.

Ojok got fewer bouts of seizures and nodding after taking the herbs. He had a little more energy than his sisters and occasionally ate without interruptions of nodding.
However, two years later, frequent nodding and seizures resumed. It seemed the herbal medicine had just coated the symptoms and had quietly faded away. By July 2007, had Ojok nodded to death.

“He died, even after we tried all sorts of herbal medicine and spent more than Shs500,000 on them,” says Ajok, her eyes turning teary from the memories of her lost son.

A chill runs down my spine and I feel she should end the narration there. But her face is suddenly bright. She explains how they held onto hope, believing that an ultimate cure for the disease would be got.

By 2011, the family finally made up their minds to visit the hospital. At Dino Health Centre II, located four kilometres from home, Lakisa and Lanyero were given epilepsy drugs. The medicine seems to work for the first two days and later, the nodding and seizures would resume.

“We had tried herbal medicine in vain. It had failed to save our son, we didn’t want to go back to it,” narrates Ajok. “We just had to have hope,” she says and smiles and for a minute, I imagine some good news would follow her narration. I was wrong.

After taking the medicine for two months, Lanyero’s condition started deteriorating. The convulsions were stronger, the nodding more frequent and the falls, almost daily.
“She died. It was February 24, 2011,” says Ajok, her face expressionless.

By that time, Ajok and her husband had loosened their grip on hope. They had stopped praying for Lakisa, who was the remaining sick child. “It just had to be one day at a time,” chips in Okot, who had all along been looking at his wife as she narrates the tale of their children’s demise.

Lakisa had been responding well to the medicine. She would stay for a week or two without nodding or getting seizures. She had even started eating well. “She only got seizures when the medicine got finished,” says Okot.

However, by April 2011, Lakisa’s condition had started waning. By April 9, she had become so weak due to the convulsions and seizures and her medicine had gotten finished. “I think we delayed to take her to the hospital, the disease had ‘eaten’ her body already,” says Okot.

There were times Lakisa would get frequent seizures and had to be held by at least two people so that she does not hurt herself. “She used to get seizures after every three minutes. Her waist bone was dislocated, her fingers and hands had become stiff,” explains Okot, who adds that when Lakisa gets seizures, she jerks with so much strength that one wonders where it comes from.

He dashed to the hospital, but at Dino Health Centre II located about four kilometres from home, the in-charge told him he had arrived late for the day and could not be served. “I was angry. I was desperate because I knew I had left a child gasping for breath at home. I imagined she could even be unconscious,” says Okot, the anger in his heart clearly audible in his words.

That night there was no sleep. Okot and his wife took turns, holding Lakisa every time she got seizures. They prayed for time to move twice as fast so they can run to the hospital the next day.

By morning, Lakisa was exhausted. The seizures had drained all the little energy she had but Okot made the last try. He ran to the health centre and ‘luckily’ found the nursing assistant on duty. The medical officer seems to have been briefed about Okot’s disappointment the previous day.

Without wasting any minute, he gave him the medicine.
“I rode the bicycle fast, so fast because I knew Lakisa’s survival depended on me and the medicine I was carrying,” Okot says. When he arrived home, Lakisa was unconscious. She had had countless seizures. Okot and his wife sat and waited for her to regain consciousness. When she did 30 minutes later, their faces lit up with hope and relief – but it was only for a moment.

The seizures resumed, five minutes later. Ajok held Lakisa in her arms, while Okot sat near his wife and daughter holding a cup of water and medicine. “Her jaw was locked, we could not give her food, not even water and not the medicine,” says Okot.

That’s how far they could go. “The seizures never stopped, the convulsions just became stronger. And she died also, like Ojok and Lanyero,” says Okot, looking at me and waiting for me to ask him another question. I didn’t. I just said ‘sorry’.

Today, a family of six has been halved because of the nodding disease. Akot and her husband derive joy from their last born son, the only remaining child in the family.

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