By Esther Namirimu
JOSEPHINE Kokugonza, a resident of Ggobe zone, Bunamwaya in Wakiso district and a single mother of two, reveals how her son gradually became blind after being injected with quinine.
At six years, Gilbert Lukwago cannot stand or walk by himself, speak, see or signal when he wants relieve himself, his only sense that functions is the hearing sense.
He was born a normal child until that fateful day when he fell sick for the first time in his life at the age of 11 months.
“I was not at home with him; I was at Katuna border coming back from Rwanda where I was doing business at that time. The housemaid called to inform me that my son was ill, so I asked her to take him to hospital” Kokugonza says.
“He had malaria and a nurse injected him with quinine on the left arm. When the maid called to tell me about the treatment, I sensed danger and immediately took the child to Rubaga Hospital the following day.”
“The doctor told me that it was wrong to administer quinine via injection to such a young child and that instead they should have given us quinine syrup instead. He added that to make matters worse they had injected in the nerves.
Gilbert's caretaker Annet fastening his special shoes that support and strengthen his limbs. Photo by Esther Namirimu
The doctor assured me that with time the quinine in the body will reduce and the baby will become fine but that is if we give him a lot of drinks.”
At the age of one and a half years I realized that my baby was not active like other children of his age. He was over sleeping, he was not playing or even trying to move or speak.
I took him to Ruharo High clinic in Mbarara to know why he did not have sight; this is where Dr. Claudia (a white woman) examined him and told me that the quinine injection had affected my son too much. That quinine had weakened nerves connecting from the brain to sight, speech organs.
She added that the eyes were ok but the interpreter from the brain cannot interprete well; or tell who is who. I was advised to buy Christmas lights and put in his bedroom. That I should make sure the room is dark enough then switch on the Christmas lights with different colours, so that he learn to see the difference.
I was also advised to torch his eyes so that the sight comes back. Before that his eye balls used to roll in the eye socket a lot but they are now stabilizing.
Dr. Claudia also advised me to put Gilbert in physiotherapy, since he was injected in the nerves, so the whole body was affected. The physiotherapy has helped him to gain strength in the legs and the arm. I am glad that now he can stand, leaning on the whole.
I enrolled him at Katalemwa Cheshire Home for Rehabilitation Services at the age of two years old.
Hiring special caretaker
When I took him to Katalemwa, they first rejected him saying he was too young to be enrolled in the boarding section, but what I wanted was to make sure that my son starts rehabilitation at a younger age; as you know the earlier the better.
Francis Mugwanya helps Gilbert into his new wheelchair. Mugwanya is the director of Father's heart Mobility Ministry. Photo by Esther Namirimu
I had to hire a special caretaker; Katalemwa has trained caretakers but if your child does not come from a district with an active program then you will not be entitled to sponsorship and that means you have to foot the bills including paying your own caretaker.
At first I was paying the caretaker sh50, 000 per month but providing her with all the requirements she needed. Then I increased her salary to sh70, 000.
Then one day she told me that she was leaving and did not want to work with Gilbert any more. I cried because I could believe that she was leaving us. My son had got so connected to her; they had a special bond.
Then one of the teachers from Katalemwa called and informed me that there was a parent who had offered to give her sh200,000 per month. Imagine from sh70,000 to sh200,000. I called her to the sitting room and told her to look at Gilbert as her brother. I reminded her that Gilbert only understood one person and that was her.
Then I begged her to think about her decision. Afterwards I went to the bedroom and prayed and begged God to make her change her change her will. Then she came and said ‘Mummy, I will stay and keep Gilbert company’.
Annet feeds Gilbert who cannot hold the juice box all by himself. Photo by Esther Namirimu
So I increased her salary to sh100,000. And she promised to stay but being a girl I know that time will come when she will need to start her own family and that is why I want to utilize this opportunity so that Gilbert can at least learn to do some things.
Sh1.5M every two months
I have to spend sh1.5M every two months; sh1000,000 for school fees. I spend ush500,000 on brain boosters and these can take us for about six to eight months. He is on a special diet with foods like Weetabix, soya, honey and milk.
I also have to buy pampers because Gilbert uses pampers day and night. I have to buy special shoes; long shoes have coffles, which have insoles that help the child learn to move.
I was advised to create a swimming pool for him. Before, we were placing him in a basin but now that he has grown we need to buy a plastic baby swimming pool. I have to buy him a walker, standing frame and a wheelchair to ease the movements because he is heavy to carry and can't walk on his own.
If I can get someone to support me, I would be very glad. Because as a single mother I have other children to cater for and it is too expensive for me to spend almost 2 million shillings on one child every two months. The truth is that by the time I decided to come out the problem has become unbearable.
Mugwanya with Gilbert’s mother Josphine Kugonza and Sheila Nvannungi after he received his wheelchair. Photo by Esther Namirimu
Last year I sold off my car in order to be able to provide my son's special needs. At the beginning of the year I sold off the fridge and today I have just sold off the dining set.
We have visited so many hospitals in Uganda. Whichever hospital I heard that could perform miracles, I made sure I take my Gilbert there.
Meanwhile each time I had to foot bills to transport the caretaker also because we had to move together and Gilbert understands her more than anybody else. We visited Rubaga Hospital, St Benedicto in Tororo, Corsu, Cure Hospital in Mbale, Mengo Hospital, Mulago Hospital, St Catherine for EEG scanning, Emerging center, visited Dr. Byarugaba a specialist for children in Bugolobi, and Dr. Rose a physiotherapist in Bukoto.
Receives a wheelchair
When I approached the New Vision for the first time, so many people like Princess Sheila Nvannungi read the story and mobilized her fans.
When she mentioned my son during her talk show, one of her fans talked to Francis Mugwanya, the Director of Father’s Heart Mobility Ministry, who gave us a wheel chair the following day.
Gilbert was so happy to receive the chair and he was all smiles. Since he has grown too heavy to carry yet at the same time he would be a heavy much load for one person to carry, this wheel chair will help us a lot.