This marks my final week in Uganda. Having interviewed over 350 adults and children over the course of the last five weeks, the data collection aspect of this study has been wonderfully successful. Yet, two pictures have become permanent fixtures in my mind and I find myself inspired, challenged, and disturbed by what they have come to represent. My hope is they do the same for you. – Tim (nfschildren@gmail.com)
PICTURE 1
"JOHN"
These pictures are of John in 2003 (pre treatment) and 2007 (taking ARVs) with his toy lion.In 2004, a BBC reporter visited Namugongo Fund for Special Children in order to report on the case of a young boy who was soon to be the next victim of AIDS. When NFSC staff recalls John and his rapidly deteriorating medical condition, they describe a sickly boy with “an odd-shaped head” and “bones sticking out strangely…just an awful situation.” A death sentence seemed inevitable … but three years later he is still alive … with a physical figure resembling more “rollie-pollie” than emaciated.
I first saw the left-hand photo in an album on a shelf at the NFSC clinic. Dated 2003, the pictures was taken when John was about four years old, prior to beginning antiretroviral (ARV) treatment for HIV, a disease he was born with.
Ironically, I first ran into John at the NFSC clinic. I did not know it was him at the time, however. Having been on ARV treatment for the past three years*, John looked nothing like the photograph I had been looking at. Standing in front of me was the boy in the photograph on the right: a seven year old boy in Primary 1, possessing an outgoing personality and playful smile. Everyone seems to know who John is; and everyone who knows John, loves John.
I arrived at John’s home one afternoon and was greeted by his kindhearted grandmother Jjajja. “He’s been suffering from a fever and vomiting these last few days,” she sighed. “A little bit of malaria I think. There was no treatment for him at the [NFSC] clinic, so we transferred him to another one.”
Malaria is painfully familiar to the boy. Two years ago, a serious bout with the illness left him slightly paralyzed on the left side of his body, leaving a painless-yet-awkward limp. “I didn’t know if he will ever walk properly again” said his grandmother as she sat on the front steps of the home.
Nine of Jjajja’s grandchildren live with her in her small home, including John. I wondered how they all fit. “Some sleep two-two-two and some one,” she replied. This figure included two small bedrooms and a dining room which functions as a third bedroom in the evening. “They put their beddings in the rooms during the day,” said Jjajja of the dining room sleeping arrangement.
Jjajja reports that the orphaned grandchildren living with her come from several different mothers and that she’s been taking care of these children “for a long time - some as many as 15 years. John has been off and on at school due to sickness associated with his HIV status. He began ARV treatment three years ago, giving him a new chance at life. “In the beginning he was taking liquid medication and then they changed it to tablets. He no longer gets off and on sickness as often as he used to. They also reduced the number of tablets that he needs to take. It used to be four in the morning and evening but now it is two in the a.m. and two in the p.m.”
Jjajja, John, and the rest of the family receive assistance from NFSC. Along with basic medical treatment, the program provides free breakfast porridge at the breakfast center for John, which is critical as he must receive adequate nutrition in order for his ARV medication to work effectively.
* NFSC partnered with the Joint Clinical Research Centre in May 2006 in order to provide free ARVs to children and families. Prior to this time, NFSC worked with Mild May, a pediatric HIV program, to provide ARVs to children (like John) free of charge.
PICTURE 2"OLIVIA"
Olivia was following several steps behind me as we made our way out the front door of her small home. We were headed down the dirt road to buy a loaf of bread for her family as a small gesture of thanks for allowing me to visit the home. The interview we just completed with her and her auntie was intensive to say the least, and I left the home with doubts as to whether I would be able to convey everything I had learned and observed into words that would accurately portray the family’s circumstances. In a final effort to capture the conditions before me, the small girl stood in front of my camera as I snapped a picture of her auntie in front of the home, resulting in an image that, for this reporter, has come to symbolize the dire health conditions of the orphans and vulnerable children that I have met over the past several weeks.
Olivia is sick. And her telling face does little to mask this fact. She wore a pink shirt with a large white heart in the middle; she also wore the same irritated expression on her face throughout the visit. She had a rash covering most of her exposed body, and as I entered her home the auntie was applying a cream behind her left ear. Her thinning hair, exposing unexplainable sores, looked like that of a person who had experienced unwarranted stressors and trials over the course of a lifetime. At four years old, I did not doubt this to be true about Olivia’s situation as well.
Olivia’s existing medical challenges can largely be traced back to the day she was born. Her mother passed along HIV to her daughter during childbirth and eventually died from the disease. She started receiving services from Namugongo Fund for Special Children when her mother came to the clinic to inquire about treatment in May 2006. When Olivia’s mother passed away, she also passed along her two children to her sister, Gladys, to take care of. The challenges of not only two additional mouths to feed, but two children with complex medical conditions – Olivia with HIV and her older sister with a heart condition - was undoubtedly a challenging time for Gladys. It was around this same time that Gladys’ husband died from the disease as well.
From the time they first came in contact with one another, NFSC has worked to support the family’s challenging circumstances. For a time, Gladys took Olivia to the clinic each morning, and the staff would look after the girl during the day while Gladys continued working to put food on the table for the children. Each evening, Gladys would pick Olivia up from the clinic and take her home. Recently, this arrangement transformed into a paid position for Gladys. She provides janitorial services for the clinic while her neighbors watch Olivia during the day.
Speaking with Gladys, she exudes a resiliency and determination that is difficult to comprehend. “I do not have so many problems,” she told me during the home visit. After learning about her current situation, I am not sure I fully agree. Gladys works as many jobs as she has time for. In addition to her part time work at NFSC, she earns wages through washing her neighbors’ clothing and selling old clothes when she can.
Gladys has two children of her own, a 7 year-old and 13 year-old. The four children and their caretaker stay in a two-room residence. The front room is the common area; the back room is the bedroom for the family. One twin sized bed was in the corner of the room and two pieces of folded foam were folded on the ground.
Gladys reports NFSC being a significant contributor to the well being of her family. “Getting food is the biggest challenge.” The program delivers the ingredients for NFSC’s trademark porridge, and Gladys cooks the porridge for her family at home. “We eat porridge in the morning; sometimes if there is not enough food, we will have porridge in the evening as well.” NFSC provides the family with basic medical support through its main clinic, and through its partnership with JCRC, Olivia receives ARVs free of charge.
Each time I look at Olivia’s picture in front of her home with her Auntie Gladys looking on, I am haunted. Olivia’s knowing eyes pierce my heart, looking deep into my soul. In Western terms, I am holding the hand not of a little girl as much as a health statistic in a developing country. Olivia’s plight is simply the unfortunate outcome of a “know-do gap.” So often we know so much about a problem, but we fail to understand; we fail to get on our knees and look at it through the eyes of a four year old.
So we do nothing.
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