Uncertain future for 18-year-old with cerebral malaria

Eighteen years ago, Rose Kisakye and Samuel Ssekabambe were blessed with their only child, a girl they later named Marion Nanozi.

She was a healthy child and just like most babies spent most of her time sleeping.

The toddler was in good shape until she unexpectedly got a high temperature at three months. The mother, panic stricken, rushed the baby to Mengo hospital where she received urgent medical attention.

Later, after the baby’s condition became stable, Kisakye took her back home. However, after a few days, the mother noticed something terribly wrong with the child.

“She was no longer happy. She had unstable movements and would stare for long without blinking her eyes,” Kisakye says during our meeting held outside their one roomed home in Nsoba, Kawempe Division.

Despite her willingness to discuss her daughter’s condition, she emphasises at the beginning of the interview that only Nanozi’s photographs should be taken and not hers.
“The story is about her, not me, therefore only her pictures should be taken. Let her be the focus,” she stubbornly stated.

Life now
Nanozi who is now grown up stays with her mother most of the time.

Dressed in a cream shirt with a black collar and yellow patterned skirt, Nanozi sits beside her mother during the interview. A number of craft items surround her as she carefully and slowly weaves a mat.

I ask about how she is and her response is a simple, “I’m fine,” before she resumes to weave. She looks tired and fragile as she goes about her work.

When I ask Nanozi if she can do any other work besides weaving, she stares blankly at me for long before speaking uncoordinated words.

“Sometimes the things that girl says do not make sense. In such situations, I intervene,” the mother interjects.
It is from here that the mother takes over to narrate about her daughter’s condition.

“I’m really worried about her future. What if I pass on, who will look after her?”

One time, Kisakye sat Nanozi down and started talking to her about her future. “I told her that it was important for her to know how to do work because when anything ever happened to me, the skills she would have attained would help her push on with life,” she says.

On whether Nanozi understood what she said, Kisakye responds, “She nodded at the end of my lecture, so I presume the point went home.”

Despite having stiff muscles in her legs and hands, Nanozi under the supervision of her mother can do a few house chores. She tries to wash clothes and mop the house.

In order to acquire hands-on skills, her mother is also teaching her craft making.

“Although she takes a lot of time, she can now weave mats very well,” Kisakye says.

Struggling through
Kisakye began to worry about her daughter after she turned three years. She began attributing her daughter’s condition to many factors.

“I thought she was either not feeding well or the maid was not playing with her, an activity that is fundamental for boosting a child’s growth,” she says.

It was at this point that Kisakye, who used to deal in household merchandise in town, quit her job.

She showered her little girl with a profound mother’s affection. The youngster slowly began hitting a few milestones. Nanozi began walking on her own, she started saying a few words and playing with other children.

Sadly, it was around this time that Nanozi lost her father, therefore, leaving his wife with the responsibility of raising her single-handedly.

Midway the interview, Nanozi, probably tired, stops weaving and asks her mother that she wants to take a break. The mother permits her to go inside the house to take a nap. Slowly and carefully, she stands up and staggers to the house. She later calls out to the mother to help her change into other cleaner clothes.

With a frown, the mother reluctantly obliges. A few minutes later, they emerge from the house with Nanozi donning a green sleeveless top and black skirt. She is upbeat and even affords a smile. Moments later, she even interrupts our conversation by mentioning the challenges she faces.

“I feel bad because I’m sick. Mummy helps me. She helps me bathe, cooks for me and walks me around when I have failed to do so. I’m nothing without her,” she says.

“Some people who live around our home do not know that I’m sick. Sometimes if they find me walking, they get a stick and beat me while shouting that I should walk properly. It is why I prefer remaining indoors sleeping or playing with my doll,” Nanozi continues as her eyes get teary.

She is unable to proceed on with the interview from here onwards. She stays quiet and does not respond to any other further questions from me.

School life
Nanozi attended elementary school in Wandegeya before joining the boarding section at New Bubajwe Primary School, Kawempe. While in Primary Two, the teachers raised a red flag on Nanozi’s health concerns.

“She was drooling, disliked attending classes and instead preferred to stay in the dormitory, cried most of the time and also, was fond of throwing herself onto the ground. This often bothered and worried her teachers,” she says.

Such behaviour pushed Kisakye to make an arranged payment with the school matron to accord her daughter special treatment. The plan backfired. Sooner, the matron too began complaining of Nanozi’s disturbing behaviour.

In the end, she was forced to relocate her to Lower Nsoba Primary School, Kawempe. Unlike her previous school, Nanozi was now a day scholar on a scholarship but was manifesting the same disturbing behavioural patterns.

“I was receiving worse complaints from the teachers. That she often fell asleep during lessons and when Nanozi was disciplined for it, she would get angry and return home,” Kisakye says.

The then pupil failed Primary Leaving Examinations (PLE). She sat for the exams in 2011. The mother together with the head teacher, made a request to Uganda National Examination Board (Uneb) for Nanozi to re-sit and do oral examinations instead.

The response from Uneb was that it was too late. Rather than let her daughter sit idle at home after failing examinations, Kisakye was advised to enroll her at a technical school where she would receive employment-preparation skills. The mother heeded the advice and took her to St Cecilia Vocational Training Institute Kisubi, Entebbe in 2012 to acquire hair dressing skills.

Changing school
Life was not any better there. The complaints were numerous and even much worse, this time round.

“The biggest complaint I received here was that my daughter disliked attending classes. She preferred staying in her bed while others were in class,” she says.

One time while paying a visit to Nanozi at the institute, Kisakye requested her daughter to take her to the girl’s hall of residence. Nanozi was at first hesitant but gave into the plea after the mother persisted on seeing where she resided. At the hall, Kisakye burst into tears after seeing the state of her daughter’s bed.

“The bed was shabby. Unlike other girls she was sharing the room with, my daughter had not laid hers and there were dirty clothes all over,” Kisakye says.

Going for treatment
This was a wake-up call for her mother. With the little money she had saved from craft making, a business she is currently involved in to sustain the family, she took Nanozi for a thorough medical checkup.

“After telling the doctor from St Catherine’s Clinic, Buganda Road about my child’s health history, she concluded that part of Nanozi’s brain was damaged during her infancy as a result of cerebral malaria,” she says.

This reporter was not able to reach the said doctor as Kisakye does not remember her name or telephone number. In addition, she does not remember where the medical documents are. “There are somewhere in the house. I just do not remember the exact place I kept them.”

But one wonders though why Kisakye had to wait for all these years to take her daughter for a thorough medical checkup.

“I did not have money and I still do not have it. If I had it, I would take my daughter to see all the specialists.” She replies, adding, “It is for that reason that her primary and technical education was sponsored. I could not afford it.”

Nanozi’s state did not permit her to continue with her schooling. Her mother discontinued her in 2013. Unfortunately, she did not master any hands-on skills.

Kisakye hopes to find the required amount of money that can enable her take her daughter for specialised treatment.

What is cerebral malaria?
Dr Alex Kakoraki, a general practitioner at Murchison Bay hospital, Luzira says.

“Her symptoms direct to cerebral palsy as a complication of cerebral malaria which she got during her early infant years. In order to manage some of these signs, a parent may hire the services of a special needs teacher, psychiatrist or even a mental health specialist, among other specialists.”

Marion Nanozi, 18, was affected by cerebral malaria. Her mother wishes, she could attain vocational skills but it cannot happen at school.