Pulse on the Road in Sunny California

Speakers Michelle Rice, Kelly Lynn Gonzalez, Laurie Kelley

Warmer than the
California sunshine was the greeting the Pulse on the Road speakers received
when visiting Buena Park on May 13. Executive Director of the Hemophilia
Foundation of Southern California Michelle Kim opened the Friday night event by
welcoming the large audience, who had just finished a delicious meal, and
introducing me, Michelle Rice (vice president public policy and stakeholder
relations, NHF), Paul Clement (science editor, PEN), and Kelly Gonzalez, person
with von Willebrand disease and mother of a child with the same.

See all photos from the event here.
Volunteers Patti Huerta, Linda Clement and
Randi DeSantis
Intro by Michelle Kim

The focus this time was
on access to product choice. Michelle Rice opened the event by speaking about
the many ways payers might choose to block choice of product—and why. Skyrocketing
drug costs combined with a plethora of new biological drugs, and not just in
hemophilia, are breaking the budgets of states and insurers. To contain costs,
payers are looking for ways to streamline contracts with the various
pharmaceutical companies. Payers might attempt to restrict brands under their
formulary. This means you must read your formulary to see if your brand is
covered. They also might attempt “step therapy,” which allows you to keep your
brand, even if it is not on formulary, but only after you “fail” at the
approved brand. What does fail mean? The drop fails to stop your bleeding. This
approach seems quite risky for those with bleeding disorders.

 
My talk followed
Michelle’s and I focused on what you need to know about product choice in order
to challenge your payer to keep the drug you want. Kind of like a Hemophilia
Products 101. We started with the basics: plasma-derived versus recombinant. Safety
versus purity. First, second and third generation drugs. Prolonged half-life
products. And what’s in the pipeline… and that was at once exciting and scary!
You can see that if you are a payer, you will soon be deluged with new
products. I asked the audience to guess how many factor VIII and IX drugs there
are currently on the market. They replied, six? Ten? How about 24! And more to
come.
The evening finished up
with Kelly Gonzalez’s riveting take of how she took control of her own health care
in the face of apathetic payers who did not understand VWD or her needs or that
of her daughter. Kelly’s story is a model for anyone looking to achieve success
in securing products and services. It’s dramatic, gut-wrenching and
inspirational!
When we finished, we had
the audience choose by applause where they’d like a donation from Pulse on the
Road to go, and the Emergency Fund won. POTR gave $1,000 to the HFSC in recognition
of its advocacy and great work for families. Michelle Kim has turned heads with
her new leadership and we look forward to more great things from this vibrant
chapter!
I recalled I first visited
this chapter in 1992, where I first met Paul Clement and wife Linda, who are
now my long-term dear friends, and also colleagues. Paul, as you may know, is
an extraordinary writer and researcher for us at LA Kelley Communications. And
I saw so many others I met here long ago. It was great to see everyone.

Thanks to Michelle and
her team for hosting us; and thanks to Baxalta for supporting this event!

Pfizer Hemophilia Connect: New Resources, Better Accessibility


Part of my work providing educational resources for the last 25 years to the bleeding disorder community is to remind families from time to time of the many great offerings that help us cope with a chronic disorder. I encourage you to read the below to learn more about what Pfizer has to offer the hemophilia community.

New Resources – For over 19 years, Pfizer has been a part of the hemophilia community. Pfizer understands the challenges that come with living with a bleeding disorder, and we are committed to helping improve patient lives and the lives of their caregivers. Now, a group of Pfizer Hemophilia employees is dedicated solely to providing support to the community: the Pfizer Patient Affairs Liaison. Your Pfizer Patient Affairs Liaison is available to help patients and caregivers access the support and information they need from Pfizer. 
Better Accessibility – Pfizer Hemophilia Connect, a one-stop destination designed to provide easy access to all of Pfizer’s hemophilia tools and programs. The Pfizer Hemophilia Connect support team is dedicated to working with patients, their caregivers, and healthcare providers or pharmacies to connect them to helpful Pfizer tools and programs based on their individual needs. 

Pfizer Hemophilia Connect can be reached Monday through Friday from 8:00 AM to 8:00 PM ET.
The content of this post is provided and sponsored by Pfizer.
PP-HEM-USA-0438

Mental Health Challenges in the Bleeding Disorders Community

Mental Health Awareness Week begins May 15, so it’s a perfect time to think about mental health challenges that individuals with bleeding disorders and their families may often face.

People with chronic illness experience difficulties that can contribute to the development of depression, and people with bleeding disorders such as hemophilia are no exception. As early as childhood, people with hemophilia may have difficulty forming and maintaining friendships due to frequent surgeries and hospital stays, or because they need to avoid activities that other children are free to enjoy. They may appear “different” from their peers because of bruises, needle marks, or swollen joints, which can make them targets for teasing or bullying. As a result, they may struggle with social isolation, body image issues, and chronic pain, which can contribute to depression.

Social isolation and its role in depression can be a problem for people with a bleeding disorder into adulthood. Indeed, lack of social support has been noted as an important risk factor for depression in a study of adult men with hemophilia. In the same study, lack of employment emerged as another important risk factor. With a bleeding disorder, there are additional challenges to finding and keeping a job, such as the need for flexibility, adequate medical insurance benefits, and an employer who supports the rights of someone living with a chronic disorder.

Another mental health challenge for people with a bleeding disorder relates to the use of opioid medications to manage pain associated with joint bleeds and surgeries. Because patients often need effective pain relief, opioids have a distinct place in their treatment. Some individuals may be concerned about addiction. For this reason, it’s important to work with a health care professional with an expertise in pain management when considering opioid treatment.

During Mental Health Awareness week and beyond, patients, parents, and caregivers should be aware of these mental health challenges. Together, we can support each other—and ourselves—throughout our bleeding disorder communities.


To get support, resources, and more to overcome challenges like mental health in your life, reach out to your local community chapter. Eligible individuals can also sign up for the HeroPath™ program and receive a personal mentor/life coach who can help keep you focused on your goals and what’s ahead. Learn more at www.mynovosecure.com.

This is a sponsored message from Novo Nordisk®.
Learn more at http://www.novonordisk.com.

HeroPath™ is a trademark of Likone Corporation.
Novo Nordisk is a registered trademark of Novo Nordisk A/S.

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!
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