Bright Days with a girl named Nagawa

Nagawa; a smiley, energetic girl of the slums, where everybody knows her name. Carried by her dirt covered bare feet, she holds her 8-year old head high, smiling at everyone.


Reading the newspaper one January day, I came across the following article, which sparked a friendship with this amazing girl:


UGANDA DAILY MONITOR NEWSPAPER + January 22, 2008
by STELLA NAKAKANDE & HARRIET. S. OKOT
She suffers mental and physical retardation; A victim of genetic disorder

All she is interested in and understands is playing. she definitely stands out from other children with her brown hair and potbelly probably due to malnutrition. At eight Oliver Nagawa has never been to school because she suffers from Down's syndrome. The condition is a genetic defect of the chromosome in the 21st position which largely causes both physical and mental retardation, Dr. Haruna Seruli, a paediatrician at Mulago Hospital says.

Children are borne with this condition. Humans are meant to possess 23 pairs of chromosomes making it 46 chromosomes. But for Down's syndrome, the child has an extra chromosome in the 21st position making a total number of 47.This defect on the chromosome leads to both physical and mental retardation. This may not be noticed at birth - which was not the case with Nagawa who was born outside a hospital setting to Ms Melida, 40. Ms Melida, a resident of Namuwongo, a Kampala suburb sells fried cassava for a living.Nagawa was normal and heavy at birth. This according to the mother was not peculiar because her baby was progressing well.However, at about one and half years Ms Melida noticed something was amiss with her third and last borne daughter."Instead of talking like other children do at this age, all she did was make lots of noise," the mother says. At three years Nagawa began to walk, a whole lot later than other children, a manifestation of low growth. She only dragged herself around and she could not support her weight. There were more questionable things that happened after this."Her legs, from the knees to the feet would swell and her skin would peel off like a snake," Ms Melida says. This went on for two years. Unfortunately Nagawa did not receive any medical attention due to lack of finances. It is at this age that the symptoms of the disease began to manifest. Nagawa developed an abnormally big tongue, a small mouth, small sunken eyes, a flat forehead, and small ears. She also has short legs and short fingers. She is mentally retarded, which according to Dr. Seruli eventually affects the development of different senses like speech, sight and hearing. Children with the syndrome often suffer from digestive disorders such as constipation. Nagawa's speech has since failed although her hearing is clear. In her community she is referred to as a 'kasiru', to mean dumb.Nagawa cannot even wash her hands let alone bathe herself. Feeding herself is also another impossible task, all she does is roll her fingers through the food and put it in other parts other than the mouth.It is, however, not an every day thing that a dumb person suffers from Down's syndrome. It is only so if the other symptoms manifest. Dr. Seruli also adds that children with Down's syndrome have a weak muscle tone such that movement like in Nagawa's case is difficult. They may not even be able to hold their hands up. These children often have holes in their hearts and are more likely to suffer from leukaemia (cancer of the white blood cells).Global statistics reveal that one in every 700 babies born may have the condition manifesting, making it a rather rare condition. The doctor, however, notes that the chances of this increases with maternal age. "This leaves a 1% chance of mothers above the ages of 35 or 40 having a child with the syndrome," he says, "and when this child grows up, there is a 50% chance of having children with the same defect."On the upper side, life expectancy of these people is 60 if no complications are acquired. The condition, however, can be detected during pregnancy using an ultrasound - and a therauptic abortion can be carried out. The disease cannot be healed given that the defect is genetic.To date, Ms Melida has not heard of Down's syndrome despite the fact that Nagawa shows all the visible signs and symptoms.For Melida, however the medical jargon may not mean much, she is only desperate for assistance as she has spent her eight years watching the child she loves spend each day of her life indifferent; with neither a care nor an understanding or even a chance at education. Nagawa's mother can be reached on 0782289797.



After reading this article and feeling many emotions, I called the mother and told her I would be in Kamapla at the end of January and would come by to meet them. I was so eager to share pictures and stories of my sister Amanda, who also has Down Syndrome, and tell her how AMAZING these individuals actually are, and they aren't victims at all !!! In fact, this population brings more smiles and laughter to a situation than I have ever witnessed before; and that is a beautiful gift that I hope everyone can witness.



The day in January that Kafero and I set out to find Nagawa and her mother, the mobile listed was not working, so we wandered for hours, with the article, looking for any clues on where we could find her. Being sent all over the market and slum, people looking at the picture in the paper of Nagawa, and being given directions like, 'go talk to the old man eating goat on that bench', who would direct us further - it was an investigation we nearly gave up on; wondering if she really existed? Eventually we ended up at a home of a woman with a child with cerebral palsy - well, closer, but it still wasn't Nagawa. Working our way through the open sewers, dirt alleys and curvy paths, we rounded a corner, and there she was! Sitting on her doorstep, smiling! She ran and gave us hugs, even though she had never met us before. We sat down and spoke with the mother (well, Kafero speaks her language, so he translated my questions and her answers). She appreciated the pics of Amanda and hearing that DS is something others have, and even across the world !






Since that day, Nagawa has been our special friend, and stopping by to visit her is a pure joy! She's started at the local school and although she understands everything in her language of Luganda, she doesn't speak, but makes noises. It's easy to tell she comprehends what is going on, and she is VERY clever ! Just like my sister too, and all people with Down Syndrome I've met! Also, she loves singing and dancing, playing and running off without telling her mom where she's going! Since starting at the local school, these days we can find her trying to write the alphabet in her notebook, and even saying the vowels 'a, e , i , o , u' .

A recent trip to the Uganda Zoo and Lake Victoria; full of splashes in the water, and monkey chases and rhino hunts !

She's such a gem !