Mary Akello looks weary and hopeless, sitting next to her 12-year-old son, Sunday Ojok, a nodding syndrome survivor, whose body size makes him look seven years younger.
Akello's husband, a UPDF soldier, was killed in Congo in 2003. She has struggled to raise her three sons and a daughter, all of whom are down with the nodding syndrome. The eldest is 18, and is the only one who goes to school amidst the frequent fits and seizures. Ojok has never tasted the joy of studying. The disease struck just as he was about to start school.
As an HIV-positive mother in Lacekocot in Atanga sub- county, Pader district, Akello faces a huge challenge of feeding children who are perpetually ill.
"I cannot leave them alone when looking for food to feed them; so, I have to request my neighbours who often shun offering the assistance thinking they may also be affected while looking after the children," Akello says, as she covers Ojok, who reportedly nods when he wants to pee.
"Although I have some relatives, they do not help me in anything. I am only strong and hopeful that one day doctors will cure my children of this disease."
Akello, whose poor health does not allow her to till the land, says the very ill children can take a week eating only porridge, while those who are better eat frequently. The four children depend on Folic acid and other anticonvulsant drugs which are administered by health workers at Atanga health centre III, a treatment centre for the disease.
"They react to the treatment differently, some of them show good signs of improvement while others take long to recover from the attack," says David Nokrach, the in-charge at Atanga. "It also depends on the stage at which you are brought in here; but generally we see improvement, because we have already discharged 46 and are remaining with 12."
But Akello says she has seen only little improvement in Ojok, since he first showed signs of the disease in 2002, despite countless visits to the health centre.
"One day I came back from home and found he was all dirty with urine and faeces," she says. "Then one day it came to a point were he lost his memory and also couldn't walk, and he stayed in hospital for three months; but up to now he has been badly off."
Her second son Opiyo also started manifesting similar symptoms in 2004; Vicky, another child in 2005 while George, the eldest got the disease in 2008.
"In most cases, though I know it's not good, I tie them or lock them in the house to prevent them from moving because they can actually roam around and fall into ditches and any nearby water source," she said.
George reportedly nods while in school, often returning home with injuries as a result of crashing into desks. George eats food while at school, but at home, he survives mostly on porridge. The family, however, gets some food for the children if they are treated at Atanga.
Akello gets medicine for the four children every fortnight. She does not have any difficulty accessing the ARVs as it is the same health centre that provides her with them.
Signs of hope
"God remember me when you come back..." 10-year-old Isaac Okema is singing in Luo. He was found abandoned by his guardian in his village in Angagura, as he lay in the grass-thatched house, chickens pecking the wounds he suffered after falling into a fire.
He did not talk or stand just months ago. Health workers say that after good feeding and treatment, his nodding condition has improved. Not only does he talk, he sings.
Another victim showing great improvement is Ronald Okot. He is now studying in Lawidul primary school in Atanga. When he was seriously affected, he couldn't even talk or walk but was tied or locked in the house. Grace Aloyo, his mother, says Okot has not suffered seizures or fits for the last month.
"I have been getting medicine frequently from the hospital and this is working very well. He no longer nods and this is really bringing back hope to my life," Aloyo says.
Mary Karooro Okurut, the minister for Information and National Guidance, on a fact-finding visit to Atanga last week, pledged to do her best to help improve the plight of victims.
"I will lobby for a toll-free line for communicating any form of emergency both within the health centre and outreaches; and the community can also use them to report cases," Karooro said, promising to push for another vehicle to transport fortified food to outreach centres.
Buoyed by some of these stories of measured success, the minister also counselled the health workers and parents, urging them to remain optimistic and give hope to the hopeless.