|By our calculations--5 hours!|
I just returned from nine days in Uganda, to assess the Haemophilia Foundation of Uganda for application to Save One Life, Inc., and also to visit with local families with hemophilia, to better understand what their struggles are. I have to say how impressed I am with the HFU, its volunteers and the accomplishments they have made to date. With board approval, we would be able to induct them as our 13th program partner. Below is one patient visit, which will give you a sense of what families in Uganda face. Their extreme poverty (average annual income is $500) is compounded severely by how far away they live from Kampala, the capital.
|Kampala farmer's market|
|Carrying banana leaves|
|Scenes as we leave Kampala|
It turned out to be way longer that we thought. A three-hour trip became 5+ hours trying to find this one family in Kyabbogo. At least we had a very comfortable van and Agnes is a great travel companion. She is only 29, but very mature, socially conscientious and dedicated. She's a registered social worker, and I was quite impressed by her. I wish I could have tape-recorded the things she said; so much wisdom, though I knew many of these things because it’s the same in so many countries. Her brother Joseph, now an MP (member of parliament), is the person who contacted me back in 2008 requesting help.
|Beauty of Uganda|
Back on the road we chatted openly, like family members. What a sharp girl she is, I thought; fluent in English, educated and a devout Christian. We agreed that this work was our calling in life, and nothing could stop us from helping the poor and suffering. I asked her when she knew she wanted to be a social worker.
“I always wanted to make an impact, “ Agnes recalled, “since I was young. I wasn’t sure exactly what I would do. But I loved it, the idea that I would make a difference in someone’s life. I always wanted to start an organization. I said to my friend one day, ‘You and I will start an organization to help people’.” It hasn't been easy trying to get the Haemophilia Foundation of Uganda off the ground. “Being a volunteer is difficult. Some people show interest and start to help us, but later they quit. I used to work as a volunteer for an NGO, for HIV/AIDS education.” But when Satish left, she felt compelled to help her brother full time. Now she volunteers full time, Monday through Friday and many a weekend, to run the HFU. There are days when she stays at the Mulago Hospital all day and into the evening---meeting with doctors and staff, and counseling patients.
By 12:30 pm, we arrived at Kyotera (“Choterra”), took a right, and the road deteriorated from paved to dirt roads, rowdy and unpredictable. We had stopped many times along the way, to ask locals on the side of the road where we were going. The frequent stops allowed me to drink in the fleeting scenery: the dusty, red clay roads that branched off from the highway and paved roads, forming a network like blood vessels throughout the country. Everyone seemed to move at the same pace, languid, at ease. There are no beggars and everyone works. Down one alley, a small child in shorts and plastic sandals lugs a huge blue plastic container with water and disappears into a slum. Roadside shops sit shoulder to shoulder: one sells tires, one sells headboards for a bed, unvarnished and raw, another sells colorful clothes and markets them on stark white mannequins, oddly out of place. Some young men wearing dusty clothes and a few teen girls in worn and damaged dresses—obviously donated (one is a shiny party outfit; one looks like a Halloween Tinkerbell costume; another is a tight club dress) wait patiently at a pump while a young man furiously wields the handle to draw water from the community well; a small wooden cart belches thick smoke from the meat cooking on it, filling the air with a delicious smell of beef, and I realize I am suddenly hungry; plump women, wearing colorful wraps around their waist and patterned turbans to protect their hair from the dust, balance fruit and vegetables on their head to sell or to bring home; three little children, the dust turning the color of their deep brown skin to chalk, dance in rhythm to the music pulsating from a radio in front of a store while an adult eggs them on. Everyone is barefoot, or at most wearing just sandals or plastic flip-flops.
When the children on the roadside glance at me, if they are not too shy, they break into beaming smiles and wave. It’s encouraged to wave back, and I try to keep the window down when we ask for directions so I can wave. “Muzungu!” they shout sometimes, their word for anyone not from Uganda, though mostly it refers to white people. It’s not a slur; it’s just their word, much like when the children of Haiti shouted “Blanc!” (White!) when they saw me, and tried to touch my white skin.
As we drive, the pavement gives way to hard red clay, with shoulders that sag, and the van rocks back and forth with the unevenness. The rains and traffic have created deep ruts. We roll up the windows as the van's tires churn the clay to powder. Now the roadside stands have disappeared and only solitary homes are spied through the thick vegetation. The homes for the most part are nice for rural homes. Mud poured into a wood frame, and hardened, with a thatched roof, or brick, made by hand, with a corrugated steel roof. Everything is cinnamon red. Red dirt road, red brick homes, red-rusted steel roofs. Red and green are the colors of Uganda.
There are several types of poverty: urban poverty, with slums, poor hygiene, noise, pollution, alcohol, crowding, waste—but access to hospitals and health care. There are megaslums, which defy the imagination, where residents live like ants in an unhealthy and often dangerous colony. And there is rural poverty, with lush vegetation, farm lands, rich soil, fresh air, room to grow—but a lack of transportation, customers, and most of all, lack of health care. Still, the scenery is beautiful, even if poor.
When we pass one small thatched mud structure, Agnes says, “That’s witchcraft.” Noting my raised eyebrows, she continued. “Witchcraft is still practiced here, especially in rural areas. That would be a witchdoctor’s place to meet with families. He will diagnose someone, and then offer a remedy. It is so crazy! He might say, ‘Take the fingernail clippings of your child with hemophilia, of the parents, of the relatives. Now go throw those in the river. The river will carry them away and with it, the disease. Your child will be cured.' Or he may take some backcloth and banana leaves and wrap up some part of the person—their hair, for example—and say now the disease is buried.”
She added, of course, it’s a scam. The witchdoctor will first do a bit of research. “He checks with other people who work with him, to learn more about the patient. What are their symptoms? Who is sick? Who has been sick in the family? Then when the family goes to see him, he will say, ‘It is your child that is sick?’ Yes! ‘He bleeds a lot?’ Yes! So it looks to the family like he is magical and knows everything.”
|The Kajimbo family: four boys with hemophilia|
After 30 minutes of jostling, we arrive at the destination: a vermilion brick-and-mortar home with a spacious front yard of dirt, and surrounded out back by farming fields. This is where the Kajimbo family lives. We unfolded ourselves out of the van and stretched, smiling at the children who gathered in curiosity. The sun warmed our visit. We decided first to get acquainted, and then to bring in the gifts. The mother Harriett and father Richard came out of the house first, and shook hands, he smiling reservedly, she smiling in anticipation. The first thing I noticed was that their clothes were remarkably clean compared to their surroundings, as though they had just changed. Harriett’s eyes sparkled, and her hair was a woven masterpiece, plaited to perfection. Her dress was bright blue and white. Richard wore a comfortable blue polo shirt and khaki pants. They were in great contrast to the children, who were dressed in stained and torn clothes, and who went barefoot, and had dirty face and hands. It was incongruent.
|Laurie Kelley with baby Joel|
|Inside the red brick home: earthen floors|
Somehow barriers came down fast and we were laughing in no time. A pod of neighborhood children plugged the doorway, leaning in, eyes wide open in astonishment. The driver had brought some bags over by now, and we handed out lollipops first—no barriers were left after that. The children saw at once that they came first. There were plenty to share with the neighborhood children, which no doubt boosted the reputation of the Kajimbo family. But Ronald still did not smile.
Our funding may help the kids get back into school, or help feed them. We share the butter, rice, sugar and supplies with Harriett, who is overwhelmed by our generosity. We hand out toys, many of them simple, donated toys, especially the super-heroes and plastic creatures that have sat in a basket for two years in my basement. I finally dumped the last of them in my duffel bag, and now, Ronald holds what looks like a silver Power Ranger-wannabe in his hands. He is dumbfounded, then catches on, then finally…. Breaks into a huge smile. Boys just love action figures, no matter where they are.
We go outside and do a line up so I can take photos. We photograph January’s knee, particularly his prominent scar from surgery, before he was diagnosed. He reminds me of Mitch from Haiti, who also almost died from surgery before being diagnosed.
Back inside, January comes out from the back room with a surprise: a chicken! Agnes laughs and I hold it for a photo opp. They offer the chicken as a token of their appreciation. The poor thing had its legs trussed up and was hung upside down, then laid on the floor, immobile. Its eyes bulging, fearful, waiting to know its fate: lunch, dinner? Were we to take it back five hours to Kampala like that? I wondered what the Sheraton staff would say if I walked in with a chicken. I had to refuse, even though this was impolite. Agnes explained to the families that I love animals and could not bear to see it like this. The lucky chicken was paroled and January took it back outside.
As we prepare to leave, we do a family picture, with me holding Joel. Harriett comes out of the house, and suddenly drops to her knees before me, and holds my hand. This is unusual for an adult, I think, and I thank her but also encourage her to stand up.
|The Kajimbo's kitchen|
Next Sunday's Blog: Our visit up north to find one family. Please check in next Sunday!
|Agnes Kisakye and the Kajimbo boys|