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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.
Tea plantations |
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 |
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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.
Ronald |
Emmanuel |
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Richard |
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January |
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 |
My chicken! |
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