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Bukomansimbi Couple Struggles to Care for Its 5 Disabled Children

Edward Mwanje and Feromera Nalule met and got married in 1995. They lived happily and supported each other as a couple, but have had to deal with one extraordinary challenge: 5 of their 7 children are disabled.

Mwanje (54) and Nalule (46) live in with their seven children in Baale village, in Kibinge, Bukomansimbi District.

Five of the children developed an array of disorders in childhood that include; mental illness, deafness, learning disability and physical disability.

The family gave birth to their first born, Maurice Namwanje (20), who after three months developed  convulsions with a heavy fever.

She was taken to a clinic where she got some treatment and stabilized, but kept receiving severe convulsions every after the appearance of the full moon for the rest of her life according to her parents.

Namwanje’s illness was passed on to her younger siblings Florence Nakavuma (19), Leolia Nakalyango (14), David Lubowa (12) and SandeKalyango (10).

“All my children were born, fine but they got attacked in infancy with a severe fever,” she Nalule.

“We took them Butayunja Health Centre and they got medication, but kept getting convulsions.”

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Nalule says she decided to put the lives of her children in hands of God.

However, her husband Mwanje didn’t sit. He was convince by his peers that his family was under ancestral curse.

Mwanje, Nalule and their children

“I frequented hospitals and found no help, so I resorted to witchcraft. I moved from one witch doctor to another, until I realized that all they were doing was driving a wedge between me and my relatives,” he says.

Mwanje insists that there is no history these kinds of illnesses in his family that he is aware of, save for one of his in-laws who had a slight physical disability.

Mwanje earns a living by digging in other people’s gardens, who pay him about Shs 5000 a day.

As many people have often alleged that some of the children’s illnesses and disabilities can be brought about by using family planning methods which are hormonal, Mwanje and Nalule say they have never used any of the contraceptives; not even a condom.

“I am still giving birth; you never know I may give birth to a president or a prime minister,” Mwanje said.

Mwanje with his daughter Maurice Namwanje

In a bid to get to the bottom of this rare situation, Chimpreports tried unsuccessfully to reach the Midwife at Butayunja Clinic, Mrs. Iboka who delivered Nalule’s babies.

At the health facility we found the midwife’s husband, Mr. Vincent Iboka, a teacher who we strangely found in charge of the clinic giving out medication to patients. He told us he knew about Mwanje’s family problem.

Vincent Iboko who we found at Butayunja health facility

“My wife has delivered four of their babies from here; I think the disability issue is genetic,” he said.

The Bukomansimbi District Health Officer (DHO), Dr. Alfred Kato Tumusiime told us that Mwanje’s issue had reached his office and he has tried to assess the conditions of the family.

The DHO said he will soon be seeking intervention from the Ministry of Health.

“When the issue was brought to my attention, I went to visit the family to assess the situation with the aim of finding out whether the children presented a risk to the rest of the community,” he said.

Mwanje’s House and kitchen

The DHO says he was unable to conclusively diagnose the children’s ailments, and that this would require higher expertise.

“There are several conditions that might manifest like that. This looks like Thalassemia which is an inherent condition; this condition is purely a genetic illness were the parents might be carrying a strain that is causing the children to have the deformities. This is my assumption at the moment, if confirmed we can treat the symptoms,” Dr. Tumusiime said.

The other possible illness Dr. Tumusiime says, is cerebral palsy which comes after a child is born, is not able to breath and then gets a brain damage.

He further revealed that the district authorities are now linking with the regional referral hospital, to get in touch with the specialists so as to find out what exactly is happening.

“The good thing is that the children don’t have infectious illnesses right now. What they have is the Convulsions and Seizures which we can control with medicine. We can also teach these children to talk, give them life skills to be able to survive.”

Tumusiime noted however, that one special issue about these children is that none of them was born in a licensed health facility. Most of them, he said were born in a small domiciliary clinic which is not licensed and others were delivered by traditional birth attendants, which raises questions on whether these children were handled properly at birth.

Bukomansimbi DHO Dr Alfred Tumusiime

“Another special thing with this family is that none of the children has ever been treated from a recognized health facility; these people have not tried so much to engage the experts and all this causes a lot of doubt and calls for investigations.”

Asked why only Mwanje’s children were affected, when the health facility has delivered several other healthy children; Dr Tumusiime said, “Once a child is born in a facility, there are many things that happen at birth which can lead to a child being born disabled especially cerebral palsy. For example if this woman specifically has a condition of a small pelvis, this will be the same issue with all the children.”

He added that said that once such a thing happens, one should first go to a medical facility and get an explanation from an expert.

“I doubt this condition is spiritual, I think it is purely genetic and can be handled by controlling the problems that children have to be able to live a decent life.”

Dr. Tumusiime however noted that despite the investigations and research that is needed to find out the cause, the most important thing is to make sure that the children improve from where they are, so that they can feed themselves, take care of themselves as well as acquiring some skills that can help them in future.

 

 

 

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