Jose Memorial Haemophilia Society

Kenya: Brian’s Story

Friday August 2, 2019

“…Africa is a place where the people do not need limp gifts of fish but sturdy fishing rods and fair access to the pond.”  Chimamanda Ngozi Adichie

You can never know the needs of a person until you visit them in their homes. And we seek to know the needs of those in Kenya with bleeding disorders. So off we went today, to visit several families in their homes. This meant hitting the road around 8 am. With us, the Kilimanjaro climbers and Save One Life executive director Chris Bombardier, were Maureen Miruka, president of the Jose Memorial Haemophilia Society, Kehio Chege, father of a child with hemophilia and cofounder, Sarah Mwangi, dedicated JMHS employee and program manager, and Isaac Maina (Waithaka Maina), a young man with hemophilia who volunteers. We had two vans, and piled into them for our two hour journey to Murang’a.

The way to Brian’s house

We first made stops at the Murang’a District Hospital, and visited three families we know well–I’ll blog about them next time!

But the most exciting part of the day was meeting a new beneficiary and last child of the day to visit: Brian Mungi. Daylight was fading as we bounced and jostled down the dirt roads, lined with towering banana trees. I was excited to meet Brian, who just got sponsored by Dr. Len Valentino, formerly of Rush Hospital in Chicago and now with Spark, who I’ve known for years. We finally pulled up to a section of forest, and filtered out. Then a short walk down a well-trodden dirt path, so overgrown it felt like passing through a huge green tube.

Brian Mungi

The extended family was there to greet us: mother and father (James), grandmother, aunts and Brian and his cousins. Our entourage was pretty big too. The climbers: Myles Ganley, Shannon Peterkin, Mike Adelman, Jim Palmer and son Sam, and Wendie and Ric Chadd. Save One Life Executive Director Chris Bombardier. JMHS members Kehio, Isaac, Maureen and Sarah. And two amazing nurses from Murang’a District hospital: Judy Mwaura and Jane Mugacha.

The house, nestled into the forest, was made of steel sheets. The roof was corrugated steel sheets so the rain can run off it. (The noise made by rain falling on steel is deafening) The house was rusty, giving it a burnt red color. And the entire family lived there, despite a dirt floor and no screens on the windows to protect from mosquitoes. And no glass either. They have electricity, evidenced by the naked bulb dangling from a wire above the doorway to the home. But they had no refrigerator. Imagine living miles and miles from any store, not having a car or any transportation and lacking a fridge!

This is almost as poor as it gets.

And yet they were happy. And they were thrilled to see us. We saw right away the fire outside, and pots of food. Mutilcolor plastic chairs were brought out with decorum from a wooden shed. Nearby, a lowly cow, standing in muck, watched and mooed pathetically for attention. But the family was busy attending to us. The women stirred pots of delicious smelling food: they had prepared a feast for us! We suddenly realized we were hungry. Brian, age nine, watched quietly but with a shy smile. Brian had only been diagnosed two years ago, after visiting the Kenyatta hospital in Nairobi, two hours away.

Brian with his father, James, a schoolteacher

The father, James, shared with us about how he grew up in this house as a boy, and now lives here with his family. He is a teacher, and spoke English precisely and eloquently. How they all manage to live together is remarkable. They did not seem scared of hemophilia; I think knowing how well the Jose Memorial Haemophilia Foundation cares for them makes them feel secure. And with his sponsorship, and access in the future to scholarships and factor, Brian can lead a healthy life. In fact, Brian may be the future for this family. He now has a lifeline and a path out of poverty. I started brainstorming the many ways we could help them: transportation, a new cow pen for the poor creature, a fridge, clothing.

Save One Life founder Laurie Kelley with Brian

Dinner was ready. Despite our being hemmed in by a forest of banana trees, and scuffing up the rich red soil of Kenya, the women were adamant that we all wash our hands. A pitcher of warm water and soap did the trick. We each took a plate while the women served us a delicious meat stew, rice, and mukimo—my favorite. The food was freshly killed, plucked, picked and cooked, giving it a rich flavor. The women stood aside while we, the guests, and the men ate.

I’ve been to multimillion dollar galas and hung out with celebrities, but none compared to the hospitality and class of this family. Class truly does come from within.

As darkness fell, it was time to leave. We had a long ride back. With many handshakes, hugs and promises, we walked away from the little steel shed they call home, and back up the hill to the vehicles. Like the other families, I will see them again on my next trip. And hopefully bring some items to ease their burden. They already gave me their gifts: hospitality, graciousness, and the opportunity to serve.

To sponsor a child or learn more about Save One Life, go to www.saveonelife.net

A feast for the guests!

“The journey is not easy…”

I’m writing from Arusha, Tanzania and tomorrow I start my hike up Mt. Kilimanjaro, the highest free-standing mountain in the world! This will be my third time. I summited in 2011 and 2016—no easy feat! Why, at age 61, do this again? To raise money for our mission—Save One Life. We’ve asked our community to help support our many programs in developing countries and donations are pouring in! Also, my fellow climbers are members of the community who want to experience a world vastly different from their own first-hand, at ground zero. To experience even for a day or two, the lives of the poor with bleeding disorders in a developing country. It is an experience they will never forget. So much so, that two of our climbers climbed with me in 2016 and have returned. And I thought I was the only crazy one!

I want so much to detail the trip right from the beginning, but there was been zero time to write or journal. A few hasty Facebook posts is all I could manage. After the climb, I will share so much more. But first, the most impactful—and unexpected—part of the trip.

Our in-country program partner, The Jose Memorial Haemophilia Society, established thirteen years ago by Maureen Miruka, mother of a child with hemophilia, took us to visit families in their homes. This idea is what distinguishes us from any other program in bleeding disorders and we not only insist on this, but we love it. But Saturday we did something different and new.

We drove to Gertrude’s Hospital, a stunningly beautiful, colorful and peaceful hospital in Nairobi. With my seven other companions, we attended a Women’s Group at 10 am, and a youth group simultaneously. The six guys took the children and young men into one room, while Wendie Chad and I, along with Maureen and assistant Sarah Mwangi, welcomed the women.

We were stunned as 28 women filtered into the room. And more kept coming over the next few hours. What was to be a 2-hour meeting stretched to over 4 hours as the women poured their hearts out. We sat in a big circle, and after a lovely prayer by Mrs. Mwangi (no relation), we went around the room. The women were a bit tentative to share. Usually all the attention is on the boys. One mother started by saying how her husband abandoned the family because he couldn’t deal with all the hospital stays. Now she has to work, cleaning houses and earning next to nothing.

Another mother optimistically said, “You have to have hope for tomorrow when you find that you are not the only one.” She lost four family members to untreated bleeds. While Kenya now has a steady though small supply of factor from the WFH and us, it is never enough.

One mother shared how her neighbors shunned her; another, how her own family turned on her. One mother was accused of witchcraft (yes, this is still a belief in rural parts of Africa).

More mothers and women kept coming in. A mother in a gray shirt shared how her first child died of a bleed. When her second son showed symptoms of hemophilia, her physician (at a major hospital!) told her son just needed more protein.

You almost didn’t need to know Swahili to know what they were saying: the pained expressions on their faces, the gestures to the elbows, knees, ankles as they spoke. One mother started to share and seconds later broke down in tears and sank back into her chair.

There was a rhythm to the conversation: the mothers started out quiet and shy as they shared. But each shared story empowered them to speak up. But the more they spoke up, the more emotional they became, and so started carrying, then reverted to being quiet. This would then encourage another mother to step up and share, and the rhythm started all over again. It was remarkable!

Maureen at last summarized the themes as the mothers shared: the need for social support; family planning; micro businesses (so the women do not have to be so dependent on men); stigmas of being different; becoming single moms as the husbands left.

The most powerful moment of the day was yet to come. Maureen presented sanitary kits provided by a nonprofit in Michigan called Days for Girls. Their motto: “Turning Periods into Pathways.” The kits were in pretty cloth bags and contained reusable menstrual pads. Some of the women present were not only mothers of children with hemophilia, but experienced heavy bleeding themselves. Physicians almost never diagnose mothers with hemophilia, but if their factor levels are below 50%, they could have mild hemophilia.

There is such a stigma around women and bleeding! We all know it, but we forget. I forget. I listened as woman after woman then shared their bleeding stories, how ashamed they feel, how isolated. It was so sad. They suffer a double blow of having a child with a serious medical issue, and then suffering themselves. Just to have them present and in a safe space where they could share, visibly empowered them! Maureen showed the contents of the kits and passed around many of them. The women checked them out and eventually all the kits found a home. The women were grateful and thrilled.

Maureen told us how women in Kenya in villages do not have access to pads often, and either use rags, or worse: they isolate themselves from their families, and stay in a corner of their thatched roof, mud hut or concrete home, and simply lie down and bleed into the sand for days. This is primitive and degrading.

What’s really amazing is my team, in cooperation with the Jose Memorial Haemophilia Society came up with this great idea and will work in partnership with Days for Girls to provide more kits and education. I am so proud of them!

The day ended with tears, smiles, laughter and of course tea! We hauled out suitcases filled with donated toys to distribute to the children. And before we disbanded for the day, the women all put a date on the calendar for the next support group meeting!

Let’s hope my climb tomorrow is as successful!

Land of One Thousand Hills… and Challenges Part I

Traditional Rwandan dancers

A dream
come true for me—  Rwanda. This trip happened to coincide with the
twentieth anniversary of the start of the genocide, April 1994. I recall
vividly watching my TV each day, holding my newborn, Mary, and helplessly
comparing her blessed life with the sufferings of the refugees in Goma, and
those trapped in their villages and in the capital, Kigali. The genocide went
on for three months while the world mostly watched, indifferent, unbelieving,
and immobile. It was then and there that I resolved to do something to help those with hemophilia in other countries. Later, Save One Life was born.
“Land of one thousand hills”
Things have
changed in Rwanda, which is one of the prettiest and cleanest of all the
developing countries I have seen. The country has been reborn, and money is
poured into healthcare. But one of the rare disorders that gets no funding or
attention is hemophilia. That’s about to change.
First some
facts: Rwanda is one of the smallest African countries, located in eastern
central Africa, about the size of my home state, Massachusetts. Nearly half of
its 11 million people live in Kigali, the capital. Colonized by first the
Germans, then the Belgians after World War I, it is an independent state now
where English and Kinyarwanda are spoken. About 95% of the population is
declared Christian.
The current
GDP (“income”) of Rwanda is about $15.7 billion, which ranks it at #141 in the
world. Average income is about $ 600 a year. And about 45% of the population
lives below the poverty line.
Farming
impacts 80% of the population. Most crops are for internal consumption, with
only tea and coffee being exported. Thanks to the wild mountain gorilla
population, tourism is the number one industry, with farming a close second.
Dinner at Dr. Fabien’s House
Life
expectancy at birth is 64 years, ranking Rwanda about196th in the world.
My
first impressions were all positive of this enchanting African land. I looked
at the stunningly beautiful pastoral vista: rolling hills, tiered like a cake
with green frosting, all farms and crops. Patched-worked in were squares of
other crops: banana trees, sugar cane, pineapple, sorghum. And everywhere
people walk, balancing great loads on their heads. Even the children: their
faces disappear under great loads of bamboo, until they resemble huge bails of
greenery with legs. Or small children struggle to haul water jugs back to their
homes. Infants are wrapped and tied onto their mother’s backs, asleep. Women
work hard here. Men push bicycles up hill, with a towering 50-lb sack of
potatoes or yams. The children wave at me and say “Allo!” A huge field in the
foothills is dotted with colorfully clothed Rwandans chopping and turning the
earth with hoes; backbreaking work. 
For
this blog I’ll write about our meetings with the hemophilia team. In Part 2 I
will cover the visits to the Genocide Museum, churches and then the Mountain
Gorillas. Because to know Rwanda, you must know more about the Genocide, and
its natural wonders which attract people from around the world.
The lone machine at the lab
On
Sunday night, April 20, Maureen Miruka and I were invited to dinner with Dr. Fabien Ntaganda and his family at his home. Dr. Fabien
is a young hematologist and the only hematologist in a country of 11 million.
He had just recently returned from training in South Africa. His daughters
Alegra and Farley were charming and we enjoyed conversing with them.
Dr. Fabien with Laurie Kelley
Maureen
is president and founder of the Jose Memorial Haemophilia Society-Kenya. She
has a son, Ethan, with hemophilia, and was compelled to found this
patient-centric organization after her other son Jose died. After knowing her
and working with her for several years, I asked her to accompany me on this
trip to create a bridge between the two countries. To me, it’s silly to have
African nations reaching out to the West constantly, and for us to help
unilaterally, when Africans can share and should share with one another.
Maureen would have much wisdom and experience to share with the patient group
the next day.
Maureen Miruka with Dr. Fabien and pediatricians
On
Monday April 21, we met at the Rwandan Military Hospital, where Dr. Fabien
works, to meet with many doctors of different disciplines. I gave a talk about
the need for leadership in starting a hemophilia foundation and also in
changing history—here, to create a hemophilia program that addresses problems
medically and socially.
Maureen
gave a presentation of her own story that led her to create the JMHS-K, and how
it is impacting lives there now.
Afterwards
we toured the pediatrics ward, meeting two pediatricians who told us about
their encounters with hemophilia patients. Treatment? Fresh frozen plasma. Not
even cryo. The first use of factor concentrate was December 2012, when a
donation from the World Federation of Hemophilia was received! December 2012!
This fact jars remarkably in a country where The Clinton Foundation
is deeply involved, where health expenditures are 10.8% of GDP, placing Rwanda at 17th in the
world, where HIV prevalence is 3%, one of the lowest rates in Africa.
 
The government
views healthcare as a human right. With over 400 health care facilities, 42
district hospitals, and 45,000 community health workers providing care are the
village level, Rwanda has created a system to bring health care to both its
urban and rural populations. Yet, life expectancy is only 64 years (and lower
for men).
Hemophilia
most certainly contributes to this low life expectancy.
And with a
population of 11 million, there should be about 400-500 with hemophilia. Yet
only 27 have been identified. Dr. Fabien showed us the blood lab, where a one
humble machine stood. Rwanda needs a proper diagnostic facility, in order to
test those with factor VII and factor IX, those with inhibitors or von
Willebrand disease.
Maureen presents how to organize a hemophilia society

The pediatric
wards were bright and cheery, with beautiful beds (so remarkable not to see
chipped paint, stained walls, overcrowded facilities) and clean floors and
walkways.

Our
driver, Lucian, took Maureen and I back to the hotel after this, where we had
lunch together, and then waited for the parents/patients to show up at 2 pm for
our first meeting of the Rwanda Federation of Hemophilia. This group was formed
in February 2013, but in actuality, nothing has been implemented or become
official. The group is not registered as a proper nonprofit with the
government, which then prevents it from participating with the WFH and
receiving the resources it needs and deserves. Our mission is to get the group
together, sort out why it has not been registered, get it registered, and get
it moving, according to the tenets of my book, Success as a Hemophilia Leader.
Fred and Prince
Emmanuel, new president
Attendees
included: Emmanuel, Alyos, and Sylvestre, all fathers of children with
hemophilia; young people Fred and Prince, brothers, and their mother. Prince, age 15, was on
crutches and needs to have x-rays to determine if surgery is possible to fix
his patella, which was knocked loose during an accident. Dr. Fabien, in spite
of all the work he has to do, had done his part and got this community
together, bless him. We met for over an hour, talking about what needs to get
done to get this new initiative moving. We ordered soft drinks and African tea
for everyone. Maureen’s lecture on what she has accomplished with JMHS was
superb and opened their eyes to possibilities—what they as a group of patients
and parents can accomplish. As an African, she can communicate with them as I
cannot; she has that credibility that I don’t.
Right then we discussed their
constitution (It needs reviewing as it’s been a year); temporary elections were
needed today, now, to get leaders in place (done!); priorities need to be
established (blood diagnostic lab and registering the society). We accomplished
all that. Fred, only age 21, took the Minutes. We were having our first proper
meeting.
It
was a good meeting, and maybe even a bit intimating, as we contemplated all
that needs to be done.
On
Tuesday, Maureen headed back for Kenya, and I had a day off to read and
organize notes from my hotel room. Later that day, Dr. Fabien and I met with
the Health Minister, the Honorable Dr. Agnes Binagwaho,
who was appointed in May 2011. The Health Ministry is located in a
commercial building, and we waited about an hour until she was done with her
other guests. A pediatrician, the Minister of Health understood about
hemophilia. I showed her photos on my laptops of some severe cases. And then we
cut to the chase.
Incredibly, Rwanda
offers health care for all individuals to access medical services, currently
95% of the population have access to insurance (current annual insurance cost
is approximately $5). Medicine is sold at pharmacies, and patients get reimbursed
about 80% through the government. Could this be done with factor?
Laurie Kelley with the Hon. Dr. Agnes Binagwaho 
No, she said.
It would overwhelm the system and is too expensive. And honestly, I thought,
asking parents and patients to pay just 20% of the costs would wipe them out.
So there is no easy solution for treatment of hemophilia in Rwanda. Yet,
Barbados, a small Caribbean country, purchases factor; Honduras, one of the
poorest countries in the Western Hemisphere, purchases factor. How can we move
other countries in the same direction?
It takes a
structure fortified by the patients, families and physicians (the Rwanda
Federation of Hemophilia; it takes help from the outside world (the WFH and
entities like us and the JMHS-K); and it takes time. And over time, Rwanda will
achieve self-sufficiency.

Our meeting
was pleasant and gave me a better picture of the challenges we were up against.
But as I watched in later days, the women walking miles carrying heavy burdens
on their heads to market, the children who were dwarfed by the huge bundle of
sticks they carted about on their backs, I know that this is a country ready to
work for its daily bread, its dose of factor. It has overcome much already, and
will over come the new challenges too.
Bamboo market
To quote the country’s president, Paul Kagame,
who led the revolt against the government during the civil war/ genocide, from
an article he wrote in the Wall Street Journal recently, “As we pay tribute to
the victims, both the living and those who have passed on, we also salute the
unbreakable Rwandan spirit, to which we owe the survival and renewal of our
country…” Think of the victims as those with hemophilia, and you can parallel
that we will succeed one day in providing hemophilia care to a nation that has
already suffered enough.
Read:
http://online.wsj.com/news/articles/SB10001424052702303456104579485452584630182?mg=reno64-wsj&url=http%3A%2F%2Fonline.wsj.com%2Farticle%2FSB10001424052702303456104579485452584630182.html

Great Book I Just Read
Shake Hands with the Devil by Roméo Dallaire
Dallaire was
the head of a UN peacekeeping mission during the 1994 civil war/genocide, in
which 800,000 Rwandans were slaughtered in three months. The book is not a
reporter’s eye-witness account of atrocities: it is a moment by moment, blow by
blow, insider leader’s view of the events leading up to the April 6, 1994
assassination of Rwanda’s president, the internal struggle to get the Arusha
Peace Accord finalized, the mobilizing of anti-governmental forces, the power
struggles between the Tutsi and Hutu tribes, the political players, and more. Dallaire
gives an exhaustively detailed account of what went on politically before
during and after the Genocide, both inside the country and globally; how the UN
on the ground reacted and the indifference of the world. It is a scathing
indictment of the bureaucratically hampered United Nations, the hesitant United
States and the self-serving Belgians. While the world watched, hundreds of
thousands of Tutsis and moderate Hutus were macheted and mutilated. How
Dallaire coped with the lack of resources, the suffering of his own troops,
constant gamesmanship of the players involved, death threats, lies from
politicians, and being surrounded by death and suffering of women and children
is nothing but heroic. He is a hero, and did his best. It is an exhausting book
to read in many ways, yet must-reading for anyone involved in charity work, war
time missions, history, the military, and huge international bodies like the
UN. So many lessons to be learned; Dallaire has done the world, history and
future citizens a vital service in providing this book. It should be a military/humanitarian
classic. God bless him. Five/five stars.

Speak Out, Create Change!

Kenyatta National Hospital

It’s
about time. Time to speak out and speak up about hemophilia: our community, our
accomplishments, our needs. Speak Out, Create Change was the slogan for World Hemophilia Day, the
April 17 event that commemorates the birthday of World Federation of Hemophilia founder Frank Schnabel, an American who envisioned our global community working
together to improve care.

As
World Hemophilia Day was celebrated in many countries, I chose to spend this
year’s WHD in Kenya, a country I have been visiting since 1999. The nonprofit I
founded, Save One Life, has three programs here—microgrants, scholarships and
sponsorships—each touching directly the lives of many children and young men
with hemophilia.
The
day was organized by the eloquent Dr. Kibet Shikuku, a hematologist at the
Kenyatta National Hospital in Nairobi, and James Kago, a young man with hemophilia. Dr. Kibet welcomed about 70 family
members—parents and children with hemophilia or von Willebrand disease. The day
provided an overview of hemophilia for the press members present, the needs of
Kenya, and words of wisdom for moving forward from this day.
Dr. Kibet lectures about hemophilia in Kenya

“My
prayer today,” Dr. Kibet invoked,  “is
that we walk forward as a group, so we can advance the issues that affect us.
We are one body with different endowed parts. We want to be worthy partners for
better hemophilia care in Kenya.”

One
main goal is to ensure better diagnosis, he added. With a population of 43
million, Kenya should have roughly 3,000- 4,000 with hemophilia. About 400
patients were identified at one point (meaning they came in at one time in
their lives for treatment), but the numbers are not reliable. Only about 50
patients are regular visitors to the treatment center.
Anastasia, lab technician

Other
take aways from Dr. Kibet:

We
Kenyans we have every right to be provided for by things that affect us with
hemophilia.
We
must take charge of our own destiny.
Togetherness
will make us strong.
Speak
with one voice!
We
must lobby the government to support testing and availability of factor.
Speak out… for kids like Emmanuel

Kibet
thanked the WFH and Project SHARE for their support of donated factor. He also
thanked donors in US, especially those who support Eldoret project, like the
Indiana hemophilia treatment center and Novo Nordisk Haemophilia Foundation.

He
also thanked the Jose Memorial Haemophilia Society and showed a photo of a man
who was in bed for four days with a severe bleed. The JMHS provided him with a donation
of factor.
He
noted that there is simply not enough factor; once Kenya secures enough
regularly, then it can offer home therapy.
Emmanuel

This
is a huge point. Kenya is large, and roads can be difficult. Most patients
living in rural villages have no way to get to the treatment center in Nairobi,
the capital, or can afford transportation. I know first-hand as I have
traversed these roads quite a few times. Imagine taking a public bus, crowded,
hot, hours long, with a painful psoas bleed or worse.

James Kago

The audience really responded to this idea and asked about
home therapy… hoping that someday, someday speaking out… will create change.

Kenya has come a long way, and I was very excited to see at
this meeting more change is afoot, all for the best, to create the kind of
unity and one voice Dr. Kibet mentioned.
The informative meeting was concluded and a delicious lunch
served outside on the hospital grounds. I was able to hang out with a few of
the boys I’ve known for years and years: Jovan, Peter, Charles (who has a baby
now!), Emmanuel, John. With all these friendly faces, it was like coming home.
Lucy Kago asks a question
Asante sana everyone!!

Mrs. Mwangi and Stephen
Moline Odwar and Laurie Kelley
Maureen Miruka of JMHS
john with Laurie Kelley
Simon, Laurie Kelley, Peter

Laurie Kelley with Lucy and son Simon
Peter, Maureen Miruka, Jovan Odwar

Kenya Day 4 Thursday Murang’a and family visits

(Posted Wednesday, August 17) I have Internet after ten days! By now you may have heard we achieved our dream: our team summited Kilimanjaro on Wednesday morning, August 10, at 6:54 am, and raised over $52,000! I’ll give a detailed blog about that but let me finish up with Nairobi first.

We were thrilled to hear that Eric Hill, president of BioRx and a sponsor, and his 14-year-old son Alex were finally arriving in Nairobi this morning, August 4, at 6:30 am. Their flight Tuesday was delayed in DC, which caused them to miss a connection, then they spent a day or so in Europe waiting for another flight to get out. The worst part is that their luggage containing their climbing gear disappeared! All the climbing gear needed for Kilimanjaro was in limbo. We thought they must be tired, and we had a full day of family visits ahead out in Murang’a, about a two-hour drive from Nairobi. Amazingly, they wanted to go straight from the airport, meet us at the hotel and come with us.

They were in for an amazing day. After introductions to Maureen Miruka, president of the Jose Memorial Haemophilia Society-Kenya, and Paul Kamau, person with hemophilia who also works for the JMHS, Isaac and Adam, young men with hemophilia and volunteers, Jagadish, who has a son with hemophilia and is a board member, we all piled into the van and headed out. With us: Julie Winton, RN, of BioRx; Kara Ryan (20), medical student; Alex and Eric Hill, Jeff Salantai (31), person with hemophilia, of BioRx; and Mary Kelley (17), my daughter. Battling thick Nairobi traffic, we reached Murang’a in two hours and first stopped at the Murang’a District Hospital. Driving up the red clay road and driveway, this was our team’s first look at a county hospital in the developing world.

Murang’a is where a whopping 80% of the JMHS’s hemophilia patients reside. Maureen and her team have done exceptional outreach to locate the patients. We met with Dr. Charles Kigo, chief of the hospital and Dr. Nguyo, who treats the hemophilia patients, and they were amazed to meet Jeff Salantai, who has hemophilia and is healthy, physically fit and strong. Dr. Kigo kept eyeing him up and down in amazement. Jeff shared his treatment regimen and lifestyle. We also presented the doctors with a gift of much-needed factor.

We toured the wards and were able to see the conditions of rural healthcare, a place where 40% of births still happen in homes. The waiting room is outside, with bench seats, protected from the elements only by a tin roof. There is a nice neonatal ward, which is nonetheless in need of a new paint job and incubators for preemies. One hemophilia patient was admitted, Zakayo, who I wrote about in April 2010, when I visited him in Muthare, the psychiatric ward in Nairobi. The poor young man had been traumatized by rioters, and admitted. Now, he was in the county hospital to treat a bleed. Still, he needed a few more tests before being released, which he could not afford. We gladly paid the bill to get him released the next day and return home.

Next stop: Peter’s home, my second visit here. Peter is Zakayo’s brother, and also has hemophilia; he looked great on this day. His home was just a quick ride up a dirt road from the hospital. Our team sat with Peter and his mother to hear how they cope with hemophilia. They were able to look about and see their poverty: a small, two room home for four adults and one child. No place to cook; the mother must cook outside in a pot. They own a bunk bed, an old couch, a small table and chair set, a bookshelf and one bed for the mother. The mother is single and pays heavily for rent and electricity. She cannot afford these things. Some days she cannot feed her children. And she must look for odd jobs because she cannot hold a steady job; the boys require too much care. How will she live? We gave her some money to help her stay solvent, pay her electricity bill in arrears, and vowed to help more.

The images of poverty continue to assault us as we moved on. Next stop: Stanley.

I met Stanley in April 2010. He was in a new location now, again a short drive from the hospital but situated off the main road, on a dirt road and down a dirt path. There’s no electricity or plumbing. They use candles, and an outhouse. Stanley has a small “farm”: one cow and some vegetables. He told us about how difficult it is to farm with joint contractures. He wants to start a business, being a street vendor selling shoes. It would cost $400 to get started, to purchase the initial inventory of shoes, and Maureen and I immediately considered him for our new micro-loan program. Our team was able to ask questions about his treatment, bleeding episodes, and life day to day. His wife is pregnant with their third child. This was an eye-opener for our team, to truly see how the other half lives. Hemophilia in such a place can be a death warrant. Julie immediately saw the need for home infusion, something that is unheard of in most developing countries. Our goal will be to break this mindset and get as many patients as possible on home infusion. We presented Stanley with his Save One Life money.

Alex began handing out candy to the many children who gathered to see the strange parade of foreigners, and they giggled and jumped with excitement! The children followed Alex and the team right up to the van windows, hoping to catch more.

Last stop before heading back to Nairobi was at the house of Virginia, Paul’s aunt. She remembered me and greeted each of us as if we were long lost family members! We all got a kick out of her enthusiastic hugs and megawatt smile. This is a beautiful lady with an incredible face etched with character. Again, the extended family lives in a jungle or forest: dirt floors, no windows, and no electricity or plumbing. They farm a few vegetables. The biggest shock was seeing little Derrick, who has a sponsor in the US. Last year’s photo showed an adorable little two year old with hemophilia. Now, he had suffered a fall, hit his head, and had a massive swelling on his forehead. Luckily, Derrick is well cared for by the JMHS, and has been receiving treatment. But with no car, no public transport, families like this are stranded! Dr. Michael Wood, founder of AMREF, the Flying Doctors of Kenya, once said that in Africa, you cannot wait for patients to come and see you; you must go see them or they will die. This is the foundation upon which Save One Life operates—we must see the patients, note their needs, and empower them. Home infusion is the only way.

I’m happy to say that all of the patients we visited have sponsors, and their sponsorship money makes a huge difference in their lives. They struggle for every single Kenyan shilling they earn, just to survive. Our dollars improve their lives instantly, giving them money needed for transportation, medicine, food and vitamins. On this visit, our team saw first-hand the difference Save One Life in partnership with the JMHS is making.





Do you want to sponsor a Kenyan child with hemophilia? Please visit www.saveonelife.org! They need your support!

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