NORTHERN UGANDA: Ariemo Milly had beaten all the odds and the future was looking brighter for her. Despite being a victim of nodding disease, she had managed to find a job, and with that, she hoped to take care of her little sister, who is severely affected by the syndrome.
In a tragic turn of fate, her hopes would soon come crashing down. Ariemo was only 19 when a man raped, impregnated, and infected her with HIV.
It happened in broad daylight, and somehow, nobody came to her help. At 17, she had secured a job at a restaurant in Kitgum town through a friend. She would wash utensils and deliver food to clients during the lunch rush. She had learned over time to detect the tell-tale symptoms of an impending episode of the syndrome. This knowledge gave her the chance to engage in normal jobs like cooking, digging, and doing the laundry, which most victims of nodding syndrome are unable to do.
We rode on a slippery and winding village track to reach Mr. Ongom David’s home in Tedlagwe village, Lamit Parish, Labong Akwang sub-county in Kitgum district. Ariemo Milly, now 21, and her sister Aber Jackline, 20, were both victims of the nodding syndrome when we arrived.Her father takes care of four nodding syndrome victims, including Ariemo, Aber, and two of his late brother’s children.
Unlike Ariemo, who welcomed us and dashed off into the neighbourhood to look for her father, Aber is unable to leave the house because her condition is severe. During our visit, she was bedridden, banking on hope for a godsend to take her to the hospital.
The home is about 10 kms from Tumangu Health Centre II, where a lone medic dispenses drugs like Sodium Volproate, Cabamazepine, and Folic Acid that help to reduce the frequency of nodding syndrome related seizures. According to Banya Geoffrey, the person in charge at the health centre, they receive at least 20 victims of nodding syndrome every month. He says that the low numbers are because patients have to walk a long way to get to the service.
Otto Joel, the first person to publicly speak out about nodding syndrome in 1998, has been a tireless advocate for the victims, who also lost one of his children to nodding syndrome.
Mr. Ongom’s daughters are some of the beneficiaries of the assistance Otto has mobilised over the years. Working with some NGOs and other stakeholders, he managed to secure ambulance services for the victims, who were too ill to reach the health centre or hospital on foot or bicycle.
Ariemo and her sister Aber first showed symptoms of the syndrome in 2004, when the family lived in a camp for people displaced by the LRA in Labong Akwang. They received medication just like other victims, but nothing was working.
Fortunately for Ariemo, she learnt to proactively manage the convulsions whenever she suffered an episode, giving her a chance to perform duties that normal girls her age do. This is why she was able to get a job in Kitgum town. However, she is now part of the statistics of the 197 nodding syndrome victims around the district who have been raped and impregnated over the years.
For her, the trauma went beyond rape and pregnancy because she was also infected with HIV/AIDS by her rapist. She recalls the events of that fateful day vividly. Just like on any other day, Ariemo was sent by her employer to deliver food to a customer.
“I had gone to deliver food when I met the monster. He dragged me in broad daylight as he tried to take me to his friend’s house, which was nearby. I made an alarm, but people looked on as if I did not matter, “narrates Ariemo.
“He then dragged me to his friend’s house and raped me while people outside did not care to help. I felt alone. “It was awful,” she adds.
After the incident, Ariemo went back to work, and she did not tell anyone what had happened to her. “I felt like no one cared anyway. “Sharing would not help,” says Ariemo. A few weeks later, she would discover that she was pregnant. It is at this point that she decided to go to Kitgum hospital for a checkup.
I was not feeling well, so I went to the hospital for a checkup. Since I was a victim of nodding syndrome, I was required to come with a caretaker or a husband. When they realised I was alone, the hospital sent me home to bring a parent or an LC letter. I picked the letter and headed back. After the tests, I was told that I was pregnant and had acquired HIV. I wanted to commit suicide there and then. I felt like my world had ended,” a frustrated Ariemo says.
Her family was supportive when they learnt what had happened. The health workers also helped her all the way through the pregnancy to ensure that she had an HIV-free child.
Ariemo is ambivalent about her future. She says not even the child she had means much. She is on ARV therapy and regularly receives the pills. She and her child now live at her father’s home, and she swears never to go back to town in search of a job. Instead, she wants to attend a vocational school and pick a skill like knitting that will help her earn some income to support her child through school.
The Acholi subregion is replete with stories like Ariemo’s. According to Dr. John Paul Kiffasi, the executive director of the Irene Gleeson Foundation (IGF), so many female victims of nodding syndrome have been raped and impregnated. Unfortunately, few can tell who their attackers are, and some, like Ariemo, are also infected with HIV, another burden they have to carry for the rest of their lives.
IGF carried out a walk in support of victims of Nodding Syndrome on July 23rd, where they received contributions from members of the community both in cash and in kind.
“We are aware that up to 900 syndrome affected girls have given birth and of these, 600 plus do not know the fathers of their children and of the 600, almost a quarter of them have also given another burden of other infections which are even more grevious than nodding syndrome like HIV. So, we have categorised them among families that are extremely vulnerable, and distribution according to our plans has to start with such families, “says Kiffasi.
The support collected by IGF will help families like that of 54-year-old Aber Grace, a resident of Tumango village in Lamit parish in Labongo Akwang. Aber is a widow and mother of 12 children. However, four of these are living with nodding syndrome, with the first one having first shown signs in 2003.
Okot Patrick was only 8 years old in 2003 when he got affected. His sister Amito Alice would later experience the same just after she turned 5 in 2005. Their other sister, Labolo Siline, followed suit at 10 years old in 2007, while Akello Violet got affected at age 12 in 2010.
Aber lost her husband, Obwona David, in 2010, leaving her with the burden of taking care of the four victims and their eight siblings. With just her two hands, she has managed to work the land to put food on the table for the family all these years. However, two of her daughters, who are affected by nodding syndrome, were raped and are currently breastfeeding.
Alice was raped at age 17 by an unknown man. Her memory is so blurred that she cannot remember what happened or who could have carried out this heinous crime against her. Due to the severity of her condition, Alice is not allowed in the kitchen or anywhere around the fireplace after she fell into the fireplace and suffered extensive burns some years ago. She is unable to talk or express herself, which may have worked to the advantage of the rapist. Her mother believes the person that attacked her to be a neighbour who knew enough about her speech and cognitive impairment as well as the family’s routine to take advantage of their absence.
Violet, on the other hand, had a man she believed loved her. She was 17 years old when the 23-year-old man impregnated her. She is also lucky that her condition is not as severe as Alice’s and she can manage to do some house chores. That is why, when she became pregnant, the man offered to marry her and take her home.
However, the man’s father chased Alice away, claiming he could not afford another burden of nodding syndrome in the family.
Aber says that in Luo culture, when a woman becomes pregnant, she must go to live with her husband until she delivers. But Violet was chased away before she had the baby and went back to her mother’s hut, where she would later have a home delivery, giving birth to a bouncing baby boy.
“My son’s dad became hostile. He called me a curse and said I needed to leave and take my disease back to my village. “After having the baby, he started claiming it wasn’t even his and that he had only accepted to marry me because the child was a boy,” says Violet.
Unfortunately, the family did not report the rape cases to the police because the station is very far away from the village. Aber also suspects some man in the village of being behind the heinous act against her daughter Alice. They are hoping that well-wishers show interest in the case and help them bring the suspects to book.
Aber’s household has a total of 12 children that she takes care of single-handedly. The government gave her a donation of 15 iron sheets to build a bigger house and leave the small huts that house her family. Unfortunately, she has failed to complete the house due to financial constraints. With a vast piece of land and only a few able-bodied family members to help her, Aber says she also needs intervention from the government, especially the Ministry of Agriculture, to provide oxen and ploughs to help put the land to commercial use.
“The government gave me a donation of 15 iron sheets, and I thought that if I finished the house, maybe my son Okot could sleep with us under the same roof. However, before I could even reach the roofing part, I ran out of money. Okot sleeps in the hut alone, and I have to stay alert from my hut every night so that when he gets an attack, I can run to help him. Whenever he gets an attack, he covers his whole body with blankets, which can easily suffocate him, “Aber says.
She adds that “Siline has very bad attacks and sometimes it takes her a whole week to recover. Taking care of these four occupies all my time and keeps me away from my gardens, and this is where I need the most help. I have enough land but not enough manpower to till it. I would love for the government to help me with ox ploughs or a tractor to do the tilling so I can plant enough crops for food at home and for sale. ”
According to Aparo Beatrice, the woman councillor for Labongo Akwang and Labongo Layamo sub-counties, they have received several reports of girls who have been raped and impregnated, but each time the mothers report to police, the culprits are released on police bond, less than 24 hours after arrest.
This is the same case with Ariemo, who reported the case to Kitgum police station. After filing the case SDREF20/04/2019 Defilement, the suspect, whom she identifies as Obuni Alex, was expected to be arrested.But Ariemo’s family says that a police officer from CID Kitgum who was sent to arrest Obuni instead told him about what was going on, which made the suspect run away.
Hon Aparo says that together, 84 girls in her area have been impregnated and had babies already.
“We have like six cases of defilement that we have brought to the police station here in Kitgum. We have many challenges, like when a mother raises an issue, that suspect is arrested and brought to the police station, but after one or two days, they will be given police bond. Also, we have those who have been impregnated. There are 84 of them who have already been produced in Akwang alone, “Aparo says.”
She adds that as Labongo Akwang, they have come up with a proposal to compel all men who are known to have impregnated the girls to take care of them. She adds that the same issue has been reported to the State Minister for Northern Uganda, Grace Kwiyucwiny, and Prime Minister Robinah Nabanja to come up with a better solution.
Aparo is calling upon NGOs to come and help nodding syndrome victims, especially girls who have needs such as sanitary pads. As a leader, she has tried to follow up on some of the cases too.
“That is why in Labong Akwang we have come up with a proposal on what to be done for these cases. A man who knows that he has produced or impregnated a girl with nodding syndrome must take care of that child whether he likes it or not. We also presented these issues to Minister Grace Kwiyucwiny and the Prime Minister last week. Because you see, these girls are suffering with nodding syndrome, but you go ahead and defile them, supposing it was your child, “she wondered.
Minister Kwiyucwiny says she has received the reports and was in the same area recently. She noted that in the Lamwo district, 77 girls have so far given birth. She, on the other hand, claims that they were awaiting final data from all districts affected by nodding syndrome.
The minister added that the men who have impregnated the girls are nowhere to be seen, leaving the burden to the girls and their families.
“It is true that there are girls who have given birth and their children are healthy; they do not have any signs of nodding disease. That’s I think is a positive. They need help. The burden is on the parents who are looking after them and their children. I do not have the numbers yet, but soon I will have those numbers, including the number of children born from the nodding victims. We have not concluded our discussion, but we do know that it is a burden and the fathers are nowhere to be seen. You can only see the mothers and their children, but where are the fathers? “We are in discussion to see how we can help,” said Minister Kwiyuchwiny.
Minister Kwiyuchwiny says that while the government is planning to help, the priority is being given to the nodding victims themselves. The victims are categorised into three, as she explains here.
At the moment, the priority is on nodding affected people, and these are in three categories. There is one group that needs treatment and nutrition, another group needs mainly nutrition, and then there is a third group that is fair; they interact with people and even go to school. There is even one who recently joined UPDF. We want to plan strategies according to their levels. They need psychosocial support because they are feared in the community and stigmatized, “added the minister.
Several homes lack basics like food, sanitation, medical care, among other essentials. According to Apiro, small help, even in the form of sanitary towels for the girls and food for their children, would go a long way to help. With partners like the Irene Gleeson Foundation (IGF), the government and other wellwishers, she is optimistic that most of the challenges can be dealt with.
However, Aber wishes and hopes that someday, doctors who took samples of her children’s blood for testing will return with conclusive results and tell them what is wrong and how it can be treated. The CDC describes nodding syndrome as an unexplained neurologic condition characterised by episodes of repetitive head-downing often accompanied by other seizure-like activity, such as convulsions or staring spells. The disease mostly affects children between the ages of 5 and 15, and it has been reported in the states of Western and Central Equatoria, Northern Uganda, and Southern Tanzania in South Sudan.
In Uganda, 28-year-old Monicah Abalo was patient zero in 1998. She is mentally challenged and has been raped and impregnated twice. Abalo’s samples were collected on several occasions by different scientists, but to date, her father, Oyo Abdalah Bakit, says they have never received any results. Their hope is that scientists will come up with an explanation some day and bring her a cure. She was only 5 when the episodes started. Due to the severity of her condition, her mental health has deteriorated and she is not physically well either. Her body is full of burns after falling into fire during one of the episodes.
As Abalo awaits, the CDC says there is still no underlying cause or cure that has been established. Through investigations, CDC scientists have tested for and ruled out dozens of potential causes, and these results have been provided to the Ministry of Health as soon as they have been available. The CDC continues to analyse specimens and other information from affected children. Results from each new set of tests are provided to the Ministry of Health as soon as they are ready.
With all the bureaucratic inertia around, the victims can only live one day at a time as they hang on to their hopes for a better future.
“These children have no dignity. They are tied to trees like animals and locked inside houses like they are incarcerated. A caretaker should be provided in areas with large numbers so that the parents can also go about fending for their businesses. Kiffasi says that daycare centres should be reopened where children can have breakfast, lunch, and dinner and parents can be free to do business.
On May 26, 2017, President Yoweri officially commissioned the Tumangu Nodding Centre, which was meant to house the victims of nodding syndrome as they were receiving treatment. Unfortunately, the centre has never been used and is unfit for its purpose. Residents have since taken out some of the iron sheets and left the whole centre dilapidated. It was not open for work, not even for a day.
While the Ministry of health in a recent report said that there were no new cases of nodding syndrome, Mr. Otto Joe, who has been at the height of reporting cases since 1998, says three new cases were reported. Two cases are in Gogo and one is in Labong, Labong Akwang Sub County. According to data obtained from the districts affected by nodding syndrome in the Acholi-region, the eight districts of Kitgum, Lamwo Gulu, Pader Omoro Amuru, and Nwoya combined have registered 4,925 cases of nodding syndrome, with 545 victims who have since died when the outbreak of the disease was reported in the early 2000s.
Our efforts to get a comment from the police about the rape cases yielded no fruit as the area DPC claimed to have no right to speak to the media. Ariemo’s case is still pending under SD REF 20/04/2019. Her family alleges that Ogwang Robert, the CID commander at Kitgum CPS at the time the case was reported, tipped off the suspect, Obuni Alex, to run instead of arresting him.
When asked to verify the claims, Suwed Mansur, the DPC Kitgum, said, “I cannot comment on this. I am not allowed to speak to the media.”