Countryside Reports, Bushenyi
It is a cold Thursday, I am all wrapped in heavy jackets, and a scarf around my neck to warm my body as I go about my field errands. It is drizzling outside and most people are indoors at a moment. As my guide (Simon) and I move towards a mud and wattle two bed-roomed house sitting on approximately 10 by 8- meter piece of land, we are welcomed by a combination of wailing voices of agony. Simon tells me it is the home of the people that he has told me about before, located in Nyakahita village, Ryeishe parish, Ibaare sub county, Igara East, Bushenyi district along Ishaka-Kagamba road.
Time is 11am and it is indeed a horrible experience that no emotional being can handle. As we knock from the behind door, a seventy-four- year old, widowed Grace Basiimire tries to welcome us. Behind the house, is a temporary kitchen and inside it, are pumpkins picked from a neighbor who has just uprooted a pumpkin plant. Her face is lighted up with a forced smile because visitors usually come with something to eat- my guide tells her she has a visitor from Kampala, and she quickly prepares for us a seat with her hands dotted with posho because the visitors have come at a hard time when she is forcing her disabled three children to eat something for survival- it is indeed a terrible environment. Behind her is a seemingly younger woman, not in her normal senses and she is the mother of the three. She is actually the fourth.
As we settle in, the environment is not any pleasant- unbearable noise is all over the place because almost everyone is crying. It is actually hard for me to secure a recorded audio of what happens around. I am told eight people stay in the house.
As I introduce myself, the children are made to stay in one of the bedrooms because the noise is still too loud, but Basiimire begins narrating a story of how life has become too hard for her to handle following a plague that has slept in her home for more than 15 years.
The house is occupied by eight members including Basiimire, her daughter and son who also stay with all their children. The head of the family passed on 22 years ago.
She tells a story of how she has suffered with a plague that she no one has made her understand following what happened to her seemingly not normal 34-year-old daughter, Zamura Kembabazi who has in a period of 16 years produced disabled children who cannot talk, walk, and grow normally.
They are Samid Musinguzi(16), Peter Nabikora(12), and Destiny Byaruhanga(07) who are all fathered by different men that have all done their “work” and ran away according to Basiimire.
“I am here troubled with all these children. Their mother who has also not been mentally normal since her birth was impregnated by three men who all produced disabled children. I don’t know what happened because our family has had no history of epilepsy. The children are all nodding and we don’t know what to do,” said Basiimire
She adds that the children repeatedly drop their heads on the chests and their bodies also shake unceasingly.
The children’s heads keep nodding, a situation that has made some medics suspect the family to be having the nodding syndrome because the condition displays head nodding, seizures, stunted growth, and purported deterioration of the children’s cognitive abilities.
Basiimire says, she managed to take one of the children, Peter Nabikora to Kampala International University in 2017. According to the documents from the hospital, nodding disease and cerebral palsy were diagnosed and the patient was referred to Mulago Hospital. Unfortunately, there was no money to facilitate the referral.
“We came here and sat because we had no money to help us go to Mulago. We have no source of income and our survival is on the mercies of well-wishers,” she says
Also, in 2017, a group of medics from Bushenyi Medical Center visited the family in 2017 where they carried several tests including HIV/AIDS and found that the children and their mother were negative.
The children have since then lived in that debilitating syndrome which has left scars around their bodies because of their continuous seizures.
Sometimes, they are put in wheel chairs that were provided by donors who had visited Kaburengye Church of Uganda, their place of worship.
How the family survives
The family is in a devastated state showing typical evidence of poverty. They mainly survive on a one meal a day, feeding on posho as their staple food, which is also through mercy provided by well-wishers.
The mother of the children, who also has mental disability is the family bread winner. She earns from fetching water for the neighbors. She fetches the water from a protected spring which is about two kilometers away from the home.
“She fetches water from a long distance, but with her money, we survive. Neighbors give her some money, which helps us to buy soap and other necessities,” says Basiimire
The family does not have a latrine, save for one that a neighbor tried building four years ago in a distance of about two meters from the kitchen. This exposes the family to diseases like cholera, and others.
They sometimes use their immediate neighbor’s latrine. The neighbor is Basiimire’s co-wife.
Besides the house, there is a slightly deeper trench that also poses a risk to the children. Their grand mother has to keep around to prevent them from drawing near the trench.
The family seems to be isolated because the situation sometimes keeps baffled neighbors off unless otherwise.
What people say about the family
Mr. Apollo Lee Kakonge, the executive director, Western Ankole Civil Society Forum once provided for the construction of the family’s kitchen made of makeshifts. He says the family is suffering a genetic disease.
“We took health experts to the family and we found that it is not a nodding syndrome like many had thought. Otherwise the children would have died long ago considering the poor care they are living in. Those children have lived like that all their life. I don’t know if they have other illnesses, but that one is a genetic disorder that could have been transferred from the parent,” Mr. Kakonge told Countryside Reports
Government has been blamed for neglecting the family. According to Mr. Simon Tayebwa, a resident of Kashenyi trading center, political leaders should have at least helped the family live well despite the outstanding challenge.
Contacted about the issue, the Bushenyi district health officer, Dr. Edward Mwesigye rules out the nodding syndrome saying the tests have been carried out and tested negative.