Nakandi smiles despite several difficulties

Josephine Nakandi was born healthy, but at three years old, she and her mother Mary Tusiime were diagnosed with HIV. Mother and child were started on antiretroviral treatment. At six, Nakandi developed headaches that refused to respond to medication. That prompted Tusiime to take her to Mbarara Regional Referral Hospital for a check-up. 

“The doctors told me she might be suffering from meningitis. On hearing  the news, her father abandoned us, leaving us in a helpless state,” Tusiime shares.

Two days after admission, she began getting seizures and the doctors recommended a computerised tomography (CT) scan. However, since the hospital did not have the equipment at the time, they were referred to Mulago National Referral Hospital. Without money to travel to Kampala, Tusiime and her daughter were stranded in Mbarara. Choosing to try her luck, Tusiime, with Nakandi waited at the bus stop. 

“The first bus rejected us. Thankfully, the driver of the second bus transported us free-of-charge. He even gave me money to transport us to Mulago where we were admitted in the Acute Ward,” Tusiime says.

Diagnosis

At Mulago Hospital, she was informed that the CT scan would cost Shs150, 000, which she did not have and had no hope of getting in the near future. By this time, Nakandi was in a coma. While at the hospital, she bumped into one of the doctors who had treated her daughter in Mbarara Hospital.

 “It was tragic watching my girl slip away. However, there was nothing I could do. That is why seeing Dr Victor Musii gave me hope. And my hope was not in vain because after telling him our situation he connected us to Joint Clinical Research centre (JCRC) who accepted to pay for the scan. Two days later, we took her to Kampala Imaging Centre where the scan confirmed she had meningitis,” Tusiime says.

Meningitis is an infection of the brain that takes advantage of the low immunity caused by HIV infection. The meningitis damaged Nakandi’s brain leading to cerebral palsy, which caused convulsions about three to four times a week and severe disabilities.

For the next 12 months, Tusiime and Nakandi were residents of Mulago and it was a year of untold pain. For instance, Nakandi was supposed to feed on milk through a tube but Tusiime did not have money to buy the milk. “Some of my neighbours in the ward and some nurses gave me milk to feed her and soap to wash her clothes. One doctor, Dr Dennis Mwesigye, gave me pampers to use. However, I had never seen them before so he had to explain what they were and how to use them. He also offered me the plate of food he was entitled to every day,” she says.

Moving to JCRC

Dr Mwesigye went further to tell Tusiime of a better support system that would help Nakandi thus working hard to ensure that they were referred to JCRC. Unfortunately, he died in an accident during the time. However, mother and daughter were blessed that by the time of his death, the referral letter had been written. That way, they were able to move there in 2006 with ease. 

At JCRC, Tusiime met two people who have been her constant support system over the years; Dr Hilda Kizito and Ms Asia Namusoke Mbajja, a counsellor. “At first, I was sceptical about dealing with these women because I had been unfairly treated by some female nurses in Mulago. However, I chose to listen and be led by them,” she says. 

Counselling

When they arrived at JCRC, Tusiime continually blamed her partner (Nakandi’s father) for abandoning them. Therefore, she was so hurt and depressed. Ms Mbajja greatly counselled her to accept the situation. “That made the difficult duty of solely taking care of Nakandi more acceptable to Tusiime. She also started looking at life more positively than before,” Mbajja says. 

In regards to Nakandi’s state, Dr Kizito says that by the time she started treatment, damage to the brain had already been done, and was irreversible. “Due to the brain damage, the convulsions set in. While they still occur from time to time, we are doing our best to control them using medication,” she says.

Because Nakandi has both meningitis and HIV/Aids, Dr Kizito says that some medications of meningitis cannot be given together with certain ARVS yet both are needed. “While some medications work well together, some are incompatible. That calls for being careful in administration to ensure medication does not worsen her situation,” she says.

School

In order to keep Nakandi’s brain active and fairly working, Dr Kizito says JCRC has enrolled her at Mukisa Foundation School, for children with special disabilities, and she is doing very well. “From the school comments, Josephine is social and has great interest in learning,” she says. 

Giving hope

To give this mother and child hope for a better life, well-wishers are hoping to raise money to build them a home. Whoever desires to contribute can simply dial *165#, select MOMO pay merchant: 623899 and follow prompts. Kindly include the reason of transfer as Nakandi Josephine for easy reference.

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