Ape Over Hemophilia

During my Uganda trip
in April, I spent two days visiting the amazing Bwindi Impenetrable Forest,
which hosts the largest number of mountain gorillas in the world. These are
different than the ones you see at the zoo, which are Lowland gorillas.
Mountain gorillas are protected by law, and Uganda has done a spectacular job
at warding off poachers and protecting these highly intelligent,
family-oriented animals. With limited numbers of passes each year, I was lucky
to get one and view two different families. Below is my experience with one of
them.
When our guide told
us that gorillas share 98.8% of our DNA, I was shocked. I wondered, can
gorillas get hemophilia? I imagine they could. There are less than 1,000 of
them, living in four national parks in three countries. If 1 in 5,000-10,000
human males are born with hemophilia, perhaps there are no gorillas with
hemophilia… yet?
Thursday, April 28, 2016   Bwindi Impenetrable Forest
The rains are bathing
everything in moisture, which heightens the colors of the emerald forest and
yellow flowers. I hear birds repeating their songs, the constant background of
cicadas, the gentle rains. Every now and then one of the workers at the Gorilla
Forest Sanctuary—Nicholas, Eli, Judith— stops to see how I am, and how the day
was. It has been a marvelous day.
I awoke this morning
in my safari tent to the distinct three-note sound of a local bird, and the
whirring crickets. It’s peaceful here. The day was overcast and cool. After
breakfast, I skipped down the red stones of the Sanctuary, took a left on the
gravel road and within a few hundred feet reached the sloping driveway of the
Ugandan Wildlife Authority. I was the only one from our lodge; a few people
from other outfitters joined us, milling about on the lawn. We were to track
the “Rushegura family” of apes. This is an active group, on the move, comprised
of 19 family members. (Read more about this family here)
Our group was:
Stephanos and Leeza from South Africa; Ali, blonde, from the UK, who had asthma
and was probably my age or a bit younger; a young woman from Israel; Gladys
from the UK, who had a swishy ponytail and riding boots that looked wrong for
this kind of hike; a tall guy, my age, with glasses and was very happy; and a
German lady, tall and blonde.
Our guide was Gad, a
dark-skinned man with a chiseled face and thin mustache, small but wiry,
donning his army green wildlife outfit. As we set out on a long, flat dirt road
for 30 minutes, we had a chat. I asked him how long he had been a guide. He
replied 19 years, which seems a long time. “You must have been here pretty much
when the forest was opened, right?” I surmised. “Yes, back in 1997. I know a
lot of stories about the gorillas.” I asked if he then knew of Thor Hanson,
author of The Impenetrable Forest,
which I had just read.
“I know him!”
exclaimed Gad. “You know when he writes about that family whose bananas were
being eaten by the gorillas?” Yes! I told him, Chapter 16. The gorillas kept
raiding the village farmers’ field, particularly banana trees, as they love the
pulp (and not the bananas, contrary to pop culture). It was delightful to share
my enthusiasm about the book (which is well written) with someone. He shared
some stories about him being attacked by a gorilla, and still carrying the
puncture wounds. We fell in to chatting quite a bit, and I told him he should
write a memoir about his years: how the forest has grown as a tourist business;
who were some of his memorable guests?
We started hitting
dense forest after an hour. The gravely dirt road became a trail, and the real
hike began. I have never experienced any hiking like this. For the next two
hours, we hacked, stumbled, slipped, hauled, crawled and grabbed our way up the
mountainside.
“The gorillas keep
movin’,” one of the guides said, translating from the walkie-talkie
conversation he just had with the trackers. The four trackers—armed with
machetes for the undergrowth, and rifles for the wildlife— were far ahead of
us, scouting for the Rushegura family. This meant we would have to follow them
up the mountainside. It’s not called the Impenetrable Forest for nothing. The
trail very quickly turned into a 45° hike, through thick vegetation designed by
Nature to keep trespassers out. The light chitchat that bounced back and forth
between the trekkers petered out, as each person focused on where each foot
would land. It was an exercise in pedestrian strategy: if you put your foot on
a root as a launch pad, you might slip from its slimy covering, or it might
twist suddenly free and ensnare you. If you fall, you crash on more roots,
downed branches, wild vines. You put your foot up on the hill sideways (you
can’t often go straight on because the angle is too steep), ducking to avoid
creepers, vines, branches above you and at face-level; you reach up, dig your
walking stick with the carved gorilla head on it into the muddy ground above
you, pull and push, then steady yourself by grabbing a tree to hoist yourself.
Ouch! The trees are covered with moss and usually thorns from some of the
creepers. You quickly learn which trees and creepers to avoid. All the while
you ascend, more and more, higher and higher. Sweat pours off you, the trees
above drip on you, the mud splatters you. “Trampled Underground” played in my
head.
The trail, barely
qualifying for that title, is strewn with rotted vegetation: brown leaves,
moldy green ones, moss, and a cat’s cradle of vines that twist and ensnare. At
times you lose your balance, and start to waver downwards. When you
overcompensate and pitch forward your foot most likely is entrapped in the
vines and roots, holding you back, so you start to fall faster into the muddy
hillside. I lost my balance many times and once fell forward on the narrow and
treacherous hillside trail, but couldn’t right myself because anywhere I put my
hands I hit thorns. “Give me a hand up,” I pleaded to the South African couple
near me and they righted me. We then had to stamp on the vindictive vines until
my foot was free.
This was just one
small step for mankind. We still had two more hours of this just on the way up.
As each of us focused
on the botanical traps at our feet, we were surrounded by a primeval forest,
which only knew how to attack and defend. Creepers encircled trees, trying to
reach the top of the canopy to get sun, and strangling some trees over time.
Certain trees grew immensely big, while saplings sprung up like mushrooms
underneath. Every type of green thing known to humankind seemed to grow here,
with no inch spared for space, except for what we hacked.
The trackers thwacked
away with their two-foot long machetes, called pangas; branches lopped off trees in seconds. It seemed horrifying
to watch them mutilate trees this way; in the States we try not to harm our
trees. But you soon want a machete yourself to protect your arms and hands from
the insidious thorny trees and stinging nettles.
I saw a sort of slo-worm,
plump, blind and primitive, lying on the sodden trail. I pointed it out and our
guide told us it was a neera. To
amuse and shock them I picked it up; it worked. Suddenly my hands felt stinging
and I hastily put it back. I couldn’t imagine why it stung me until I saw the
safari ants crawling all over it. Later I saw a white shell, a smaller version
of the ones we find at the beach, curled over and over to form a funnel. It was
empty, and once belonged to a snail, probably a long forgotten victim of the
safari ants as well.
We stop only once
briefly, to catch our breaths as we are all heaving now, to sip water, and to
listen to the walkie-talkie chatter of the trackers ahead. Gorillas still on
the move. We wipe off sweat and start again. There is no small talk from anyone
now; we are in our own little endurance trek. Ali leaned against a tree,
seemingly defeated. We still have an hour to go. “Altitude sickness,” she says, but I’m not sure that’s it. We are up a high
mountain for sure, but not the 13,000 feet where this sickness would manifest.
It’s just a very strenuous hike and someone should be relatively fit to tackle
it.
The hired porters
kindly hold hands with the women in the group. My porter, Stifa, is a girl
younger than my youngest and I hired her as a community investment. Local
porters depend on tourist dollars to help their community.
Eventually we meet up
with the trackers on flat ground, and they look as exhausted as we do. Now we
are all gathered in a small clearing; there are big potholes of mud around us.
“Elephant,” one of the trackers said. Yes, elephants live up this wild
mountain! Now the trackers hack the vines and branches trying to keep us from
the gorillas, with a vengeance. They feel the gorillas are close by. Another 30
minutes of hacking, stepping, climbing.
At long last, after three solid hours, we hear the grunting
of the gorillas. Sure enough, around a tree caged with vines and smaller trees,
is a lone gorilla, stripping leaves off a branch with his teeth. We circled
about and watched as he munched. He was not concerned with us; behind us, the
Rushegura group. The silverback, “Mwirima,” lay on his back, one foot high in
the air. Two babies, just a few months old, their wobbly heads trying to focus
on us, lay in their mothers’ arms. One had a wildly wooly mane of hair. The
struggle to get here took the wind out of us, and the gorillas were somnolent
and lazy. But we stood about, snapping photos, quiet and respectful. None came
near us. They are habituated to humans, meaning that over time, the park
rangers have approached the group every day for an hour, for years, to get them
accustomed to humans. They are wild, no doubt, and dangerous. One gorilla could
easily kill you. The silverback weighs about 400 pounds. But they have been
trained to be in the presence of humans and tolerate them. To visit them you
must be quiet, move slowly, don’t go near them (though they might come near
you), do not set off any flash photography (it frightens them, reminding them
of lightning). And you can’t trek to see them even if you have a bad cold.
Because gorillas share 98.8% of our DNA, they are susceptible to catching our
germs. This made me wonder about hemophilia; can they develop it? No one seems
to know.
The gorillas had
feasted on the forest and were sleepy. Only the infants tried to break away and
were very curious about us. Each time they tried to climb down off their sleepy
mothers, the mothers gently took their arm and placed them back in their hold.
The mothers were incredibly tender towards the infants.
A crackling noise
revealed Ali made it after all! I quietly congratulated her and she immediately
credited Gad for getting her there. “I have been a guide for 19 years,”
reminded Gad. “I know people want to come see the gorillas. So I know how to
make them come up the hill.”
Eventually, thunder
burst overhead, warning us that a downpour was imminent. Gad politely suggested
it was time to move. We all donned rain gear, which would prove useless within
minutes. We bade the gorillas silently good-bye and began a slow march down the
mountain. It took us only 90 minutes, half the time, but was every bit as
treacherous. The rain burst like water sliced open from a huge camelback
bladder in the sky. It hammered us relentlessly. My hood—I had forgotten to
flip it up after I put on my trekking hat. When I did, of course it was filled
with cool rainwater, which slid down my back uncomfortably. Within 15 minutes
we were soaked to the skin, and soon no one cared anymore that we were wet. We
had to focus on our feet again. Gravity pulled us, but the roots and vines
weren’t done yet. Somehow I sped ahead of the group, keeping up at all times
with the trackers. Through the rain, I watched as the lead tracker followed a series
of yellow slashes on the trees, and neatly halved saplings; these were his
markings for finding our way out. Otherwise, how would he know? They don’t use
GPS or even compasses.
At one time he held
onto a sapling as he walked, pulling it toward him then releasing it suddenly.
It snapped back and whipped my left thumb painfully. Another time, I slipped in
the mud—no surprise as now a stream of mud, clogged with decomposing leaves,
became our trail, and the sudden thought that these beheaded saplings could
easily impale someone. I vowed not to fall again.
There was time to
enjoy the beauty of the rainforest. Everywhere you look, there was green: jade,
emerald, forest… all shades and types. Ants crawled on the ground, birds
occasionally chirped, but mostly the forest was deathly quiet, except for the
rush of rain. The stinging nettles still caught on my pants relentlessly, and you released them like a cat’s claws, pulling them back first
and then letting go. All of our clothing had minute holes in them from the nettles,
and the next day, I would awake with dozens of small bumps on my legs, itching
furiously where the nettles stung.
I descended rapidly,
well ahead of the group. We eventually came to the waterfall, about 40 minutes
from the Uganda Wildlife Authority building. The rain tapered off and we took
photos in front of the falls. The falls pounded the rocks like white foamed
fists. Nicholas had dashed ahead of us, and had stripped off his shirt to clean
the mud off him in the pool. He looked so happy, and there was a certain
simplicity about everything. Wet, muddy, sweaty, we were happy. Gad wanted to
know what we wanted to do: eat lunch in our raincoats, in the rain, next to the
waterfall, or continue? I wanted to continue on, not interested in eating.
Everyone stood about, not able to make a decision. I simply said, all in favor
of eating lunch here? The South African couple raised their hands hopefully.
All in favor of moving on? Everyone else raised their hands. “Sorry!” I offered
not apologetically. On we trekked!
The rest of the
excursion was easier, even in the now light rain. The trail evened out but
remained muddy, rocky, slippery, serpentine. It eventually spit us out on the
main road again, that led to the UWA. Gad exclaimed, “You’re fast! Do you want
to be a tracker?” Of course, I replied!
When we got back to
the main building, I thanked Stifa, gave her most of my lunch, a big tip and
pay, and then walked back to the Sanctuary, soaked, muddy and sweaty… and
thrilled.
See photos of the
gorillas here.
 

Uganda Part 2: “Meat is Christmas”

Uganda Visit:  Sunday April 24, 2016
More like 2.5 hours!

“I feel as though the cardboard box of my own
reality has been flattened and blown open. Now I can see the edge of the
world.” ― 
Tom Hiddleston, on an African UNICEF UK mission.

Today we would visit one family in Luweero, only a
two and a half hour drive north from Kampala. This time the
van came at 9:30, giving me a chance to sleep in. The sky was
cast in pewter, heavy and foreboding. Agnes and I again stopped at a roadside store to stock up
on groceries for the family. In the back of the van we still had gift bags brought from home for
the kids. We loaded up on rice, sugar, coffee, tea, lollipops… then I discovered a toy aisle!
Balls, dolls, puzzles, building blocks, crayons and paper: all very inexpensive, and I knew they would be a big hit. 
Agnes Kiskye,
executive secretary of HFU
Herding Ankole Watusi cattle

As we drove away, I absorbed the many sights of Uganda: red, rugged
roads; little boys herding enormous Ankole Watusi cattle—startlingly beautiful animals with
saber-like horns that generally steal all the attention at farm shows; a man
riding a bicycle carrying huge 2x4s sideways; a woman balancing baskets of
vegetables. There are not many cars as we leave the city; only bicycles, as most people get
about on foot.

The rains in Africa

The sky caved in, loud bullets of raindrops assaulting the roof in an ambush. During
the rainy season, the heavens gush water as if from a hose. We
could barely see the road ahead of us–but we could feel it. The pavement once again turned to dirt as we drove
deeper into the countryside. Mud splattered and huge puddles formed in the ruts
in the road. We jostled and bumped, watching the poor pedestrians get soaked.
As we drew close to the home of our next family, the countryside became
desperately rural. Green, lush and rich with minerals,
everything grows in Uganda: bananas, tea, and coffee. Most families engage in
subsistence farming, meaning they farm for themselves and sell whatever they
have left over.

Sseempa home in the rain

At last we find the little brick home of the
Ssempa family, blocks made from the local soil. By now their dirt front yard was
a pond. Whereas yesterday I told the driver to stay away from the house so I
could snap photos without the van in front, this time I asked him to pull up as close as possible. I was
wearing tan Etienne Aigner open-toed sandals, as old as the hills, but still!
Grabbing all our bags, umbrella, briefcase, we plunged our feet into the warm, rusty-colored
water and took two steps into the home, which we quickly saw had no floor. Just
dirt. It only had two rooms in the front, maybe two in the back. And in one of
the rooms was a motorbike, the driver sitting in the adjacent room, safe from the rain. A clothesline
full of laundry hung over the motorbike, and next to the bike, three blue plastic
chairs, where we were to sit. So we all crammed into this tiny, muddy, dusty
room: Agnes, me, the motorbike, the clothes, and nine children. Justine, the
mother, shuffled in, and nodded to us quietly. The children were smiling, as we
all laughed over the rain drenching us. Without room to maneuver, we
surrendered the food, and Justine slowly smiled. The children excitedly
took their lollipops; the ice was broken. We sat down on the chairs. Agnes tried
to help me keep my briefcase from resting on the floor, but we had no choice;
and my briefcase is made for rugged travel.

Agnes explained again the Save One Life
sponsorship program, why we were here and how we could help. Now we had to do
our interviews. Nine children: Rose, Florence, Isaac, Daniel, Simon, Annette,
and three with hemophilia—Kato, Vincent and Lawrence. 
Justine is only 30 but must care for nine children,
three with hemophilia, on $1.50 a month

Justine shares her family information with us:
her husband Peter is a lumberjack but must travel far with his employer to
where they can cut trees. He is not home much. He can be gone for up to 30 days
at a time, leaving her with the nine children and hemophilic bleeds to deal
with. And with that, there wasn’t much else to say. I noted the look on her
face: distant, furtive, stressed. She looked to be about 45, and I was stunned
when Agnes said softly, no. She is only 30.

The children with hemophilia still attend school,
which is good. The school is less than a mile away, and sometimes Justine must carry the children on her back when they have
bleeds. She tells us she fears for the children with hemophilia at school. “Caning”—corporal
punishment—is popular here and causes the children to have bleeds.

While she speaks, a weak and wet kitten hobbles
in, sores on its back, and sniffs at my feet. A scrawny chicken pokes his head
in the door then scuttles off. The children wait patiently for their turn to
speak. I feel something at the back of my neck; the oldest daughter, Rose, has leaned
over to touch my blond hair. Then she touches my forearm. They want to feel my
hair and skin, which feels and looks different from their own. I smile and give
her unspoken permission by my playful response, trying to “catch” her in the
act by grabbing her hand. She smiles back.

The home is rustic: there is no running
water, no plumbing, no electricity. They use candles at night. No place to keep
food. How does she feed nine children? I ask about meat: do they get beef,
chicken? Agnes just looked at me oddly. “Meat is Christmas,” she said. “It’s
too expensive; they may have it once a year.”

Kato
Vincent
Lawrence
I learn that Kato, the youngest child with
hemophilia, had a twin brother who died at nine months from a suspected bleed. Kato is a
gem. He is responsive, curious, engaging, and always ready to smile. His two brothers are more studious
and quiet, and very shy. Interviewing them was difficult. But Kato couldn’t
wait to show us what he knew. He can write a bit in English! On the Save One Life new beneficiary form, he carefully wrote “Cow.” This was a
revelation. Together with his winning personality, there is surely hope for him
someday to rise above his origins.
Kato watches Agnes intensely
Kato can write in English!

While
Kato peers intensely into Agnes’s face as she is speaking to Justine, I glance about the home. No light can get in except through the splintered front door,
which is narrow. There are windows but they are boarded up with cloth and
cardboard. Malaria and yellow fever are rampant here, and so this must be some
attempt to protect them. The rain drums the steel roof, making it
hard to follow the conversation and translation.

 We
pinpoint the same problem we have seen with the other families: they live too
far away for immediate treatment. It takes literally hours of rough travel to
get to Kampala for treatment. They can’t afford the transportation costs: motorbike
up to a main road, then public transport. And picture yourself on a 100-250cc motorbike
on these bumpy dirt roads with a bleed, then another two hours on a public bus
crammed with people. It’s pure torture.
They love new York!

The biggest shock of all was when we asked
Justine for her monthly income. $1.50. Surely we heard wrong and we ask again.
No, $1.50. She wants a little money so she can set up a small vegetable stand
and sell whatever vegetables she has left over. Or maybe participate in a craft
to sell goods. She wants to be more independent because she can’t rely on her
husband’s income.

Laurie Kelley and Agnes with Ssempa family, Uganda

When we finish the interview, the rain waned, and the sun was shining. Within minutes, the ground was drying, the water
receding, and we stepped outside for photos. Again I take out my New York City Chapter
t-shirts, the cleanest things around here, and the three hemophilic boys put
them on proudly. We have to leave, and promise to help. Even with the children smiling,
Justine cannot muster a smile. Her eyes gaze to somewhere else and she seems
without hope. Only little Kato carries the energy and dreams of the family. I
feel he is the one who will truly benefit from our attentions, so that he can
one day care for his mother as a man. 

As we return to our world, Kato’s smile would cheer me, and Justine’s face would haunt me for days to come.

Who wouldn’t love this guy?

 Visit www.saveonelife.net for more information on sponsoring children with hemophilia, and to learn how you can help.

“I speak of Africa… “

By our calculations–5 hours!

I speak of Africa and golden joys—William
Shakespeare from Henry IV, Part II c. 1597

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

Last Saturday, April 23,  Agnes Kisakye, the executive secretary of HFU, arrived in a hired van at 7:30 at my hotel, the Sheraton
Kampala, which is perched atop one of Kampala’s seven hills. We first stopped at the city square
market for bananas for breakfast. I didn’t get out of the van, but we were
swallowed up in a swarm of Ugandans, all busy shopping, negotiating prices,
filling plastic bags with fruit. A hive of frantic activity. The bananas–called kabaragara--were
small and sweet and I devoured three. The day was cool with blue skies. We were
ready for a long road trip, south of Kampala.

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

[In fact, Agnes reminded me that I was the first to help Uganda. In 2008 an Indian working in
Uganda who had a child with hemophilia, Satish Pillai, emailed me about setting up a
foundation, and getting factor for his son. We worked together through email only, and he did all the groundwork in establishing the HFU. Satish later had to return to Mumbai, India but
appointed Joseph Ssewungu, a headteacher and father of a child with hemophilia, to replace him. Joseph and I had a
few emails back and forth, and in one he mentioned he had read my book, Raising
a Child with Hemophilia. I found that amazing. But eventually things quieted, and other countries in need diverted my
attention. 

Beauty of Uganda

We stopped en route to buy groceries for the families. Though it
was just a little street market store, we got carried away and spend $120.
Agnes seemed aghast at how freely I spent money; she was hesitant to suggest
anything because she didn’t want to take what she thought was all my money. We
bought rice, sugar, salt, Coca-Cola, cookies, lollipops, Vaseline (“For their
skin,” Agnes said), soap—lots of soap—tea, loaves of bread, and cooking oil. 

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

Going to a witchdoctor sounds quaint, but it is anything
but cheap. In a country where the average annual salary is $500, and an
educated physician earns about $200 a month, a witchdoctor can charge anywhere
from $100 to $300—a session! This is the power of culture, traditional beliefs
and desperation. Health clinics are hard to find and far away. Rural families
become victim to their limited education, isolation, and the charisma of the
witchdoctors. “There are no government policies or laws regarding witchdoctors,”
Agnes adds.

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

Still, the children seemed happy and at ease, and
deeply curious. We entered their home. There was no where for the family to
sit, so they congregated on a rug covering the packed earthen floor.
The baby, Joel, was fat and happy, and I was thrilled to take him, diaperless—always
a calculated risk—into my arms, and jiggle him on my knee. Agnes and I were
given the one bench in the welcoming room. Each child came to us one at a time,
and reached out to shake hands while bending deeply down on their knees; this
is a sign of respect for elders, and not easy to do for children with joint
deformities.

Inside the red brick home: earthen floors

Introductions: Six children, four with
hemophilia. Bad odds. January, age 15; Emmanuel, age 13; Richard, age 9; and
Ronald, age 5. January smiled but looked a bit stunned; Emmanuel had a ready,
warm, friendly smile, as if he had been expecting us at long last; Richard
conjured a mischievous smile, which made you wonder what he was thinking; and
Ronald tightened his lips at us, refusing to surrender any hospitality. But my,
were they all beautiful children. A sister sidled in through the raggedy
curtain that separated the welcoming room from the other five rooms. Josephine
seemed shy but wanted desperately to make friends with us.

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

Agnes explained Save One Life to them, and also
that I was a mother of a child with hemophilia. This tidbit also breaks
down barriers instantly. Harriett looked at me with widened eyes now. After the
overview, we did the enrollment forms, starting with January. The enrollment
was easy as there wasn’t much information, and all of it was the same for all
four kids. They all missed an entire term (out of three annually) last year due
to bleeds. School is five miles away, and they often cannot walk the distance. They
can’t afford transportation to take them to school. When they do go to school,
they sometimes get “caned,” beaten with a reed or stick for infractions. This
is old-school British and still acceptable here. January goes to school with
8-year-olds in primary 3, because he is so far behind. This embarrasses him. He
gets no treatment; Mulago Hospital in Kampala is five hours away and requires a
motorbike ride on the rough, unfinished road we just conquered, and then
waiting for a public bus to take to the capital. And it costs $50, while
the family’s monthly income is $15-$30.

Richard
January

We surveyed the house: they have no electricity,
running water, indoor toilet or plumbing, or refrigerator. The floors are
concrete or red packed soil. Cloth doors separate the six rooms and it’s
impossible to stay clean, as dust coats everything. Out back, a brick shed for
cooking, an outhouse, and one rib-showing, starved black and white dog
collapsed in the heat. All the kids—same story. What do they do when not in
school? “Digging in the garden,” which means they do chores: farming, seeding,
harvesting. Harriett is only 29, with six kids, a huge responsibility. Still,
she smiles happily as she takes Joel from me.

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.
Emmauel’s knees; all the
boys have joint damage

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

We are happy when we leave, and once back on
paved ground, we stop at a hotel for lunch, feeding the drivers as well. I don’t
each much, but enjoy a Coke immensely. Agnes and I talk about what can be done
for the family, what their daily life must be like. How much $.73 a day–the cost of a sponsorship from Save One Life, will impact their life. It might be the best thing that will ever happen to them.

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!

Celebrating World Hemophilia Day

Today is World Hemophilia Day, celebrated by thousands of people with hemophilia around the world. We’re a small community: only an estimated 400,000 worldwide. Of this, only 25% are estimated to have adequate treatment. The majority with hemophilia have little to no access to medical care or factor, the blood clotting medicine that stops bleeding.

Today is also the birthday of World Federation of Hemophilia founder Frank Schnabel, an American who moved to Canada to seek better access to treatment and financial coverage for that expensive treatment. It was there he founded the WFH over 50 years ago. Today the WFH represents a staggering 120 countries as members. With membership, these countries receive NGO training, medical help, donations of factor and educational materials.

This week I am traveling to one of WFH’s member countries, Uganda. This is my first time there, and I go to invite the country to join our child sponsorship program Save One Life. Save One Life has over 1,200 children and young adults with bleeding disorders enrolled and has over 400 sponsors who provide financial support. Nurse Kate Khair, from the Great Ormond Street Hospital in London, has been to Uganda several times to help diagnose children with hemophilia. She wrote to me about the challenges of working in a country where so many are undiagnosed and live in rural areas:

Pictures from Barbados’s first World
Hemophilia Day!

“I met a family of 4 boys who have a small holding about a 5 hour drive from Kampala (the capital). When we were there, mum was 8 months pregnant, the boys all have terrible joints and told us about having to go to the river to get water – imagine that with a big knee bleed. There was one sister; she and the dad were essentially holding the family together. The boys’ wish was to be able to go to school, but it was too far to walk. I’m sure this is a familiar story for you, but my 2 team members and I have been profoundly affected by them. Save One Life makes, I know, massive impacts on families like these.” 

Indeed it does! I am especially encouraged today by the efforts of a mother of a child with hemophilia in Barbados, Erica Worrell, who has created the first hemophilia society there. Two years ago I traveled to Barbados to try to motivate the patients to start a national patient organization. The interest was there, the needs are great; we met quite a few families and planted some seeds of advocacy. All it took at last was one brave mother to take the first steps. Today, Barbados celebrated World Hemophilia Day for the first time, and has joined our global community. This is what the day is all about, celebrating the efforts of the many who work so hard to bring support and medical help to those in need, while bringing attention to the public about this rare disorder. Together, we can do it, and fulfill a dream Frank Schnabel had so long ago.

http://www.barbadostoday.bb/2016/04/17/barbados-observes-world-haemophilia-day/#comment-96261

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