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!

Kenya Day 3: MP Shah Hospital Tour

Having a good discussion is like having riches. Kenyan proverb

Chilly weather continued in Nairobi, probably about 65 degrees. Jeff Salantai, Julie Winton, Kara Ryan and my daughter Mary were all up by 7 am for a delicious buffet breakfast. Today we stayed in Nairobi, to visit the Health Ministry, the MP Shah Hospital, and the patients. Maureen again met us at the Southern Sun Hotel after breakfast and we set out in considerably less traffic. Within 30 minutes we arrived at the Health Ministry. We were disappointed to learn that Dr. William Maina, the director of non-communicable disease department, whom I met last year, was unable to join us due to a meeting. He did, however, graciously come to the parking lot to say hello and greet the American visitors.



With time on our hands, all dressed up and nowhere to go, Maureen took us to the Westland market to buy souvenirs. My colleagues were all first-timers to Africa, and Africa has a beautiful and colorful array of gifts: from Masai warrior shields in red leather, to stone carved animals, to pottery, beaded jewelry and the colorful Masai blankets made of wool. All at bargain prices! Everyone got an opportunity to bargain the prices, although most Americans are not comfortable doing this. We did have with us Paul Kamau, Adam, Isaac and Jagadish, who helped translate and then negotiate. There were so many vendors, with blankets spread on the concrete, wares displayed, hawking for our attention. Jeff and I decided to visit the vendors in the rear, as they seemed neglected. We laughed that it was like a hemophilia meeting, where the vendors in the front often get all the traffic!

We decided to have a sit down lunch (when traveling to the field to visit patients we often skip lunch entirely!) and Jagadish, who is Kenyan but also Indian, suggested a good Indian restaurant. The food was amazingly good and we relaxed and had many laughs. Our favorite moment was when Julie mistook the jalapeño pepper for a green bean (a green bean, Julie?) and we caught her reaction on film!

After lunch came the real purpose of the day: to tour the MP Shah Hospital and then meet the patients. Dr. Paresh Dave, hematologist, took us on a tour of the beautiful, private hospital, where many hemophilia patients find expert treatment. Julie especially was intrigued with their level of care. The hospital is clean and efficient. When asked what he needed that we could help supply for his hospital, we were surprised to learn that Dr. Dave requested butterfly needles! Imagine. The things we often toss away if they are not the preferred size in our factor box. Julie was proud to relay that Alex Hill (still en route to Africa at that point), age 16, had solicited two pallets of medical supplies for the MP Shah and shipped them, courtesy of his dad, Eric Hill. Though delayed in customs, the shipment was in Nairobi and butterflies were on their way.

After the tour, we went into the lecture room to meet the patients. I was beaming with joy to see so many I had met over the past two years. Flora, a lovely woman whose son Victor had passed away at age 15, just four years ago. Florence Odwar, who we had just visited on Monday, and her daughter Moline, who has VWD; Charles, who I had visited last year at his home, far outside Nairobi, now living in Nairobi and working, and proud father of baby Alvin; Gladys with son Justus and nephew Kevin, who wants to be a doctor. I gave lots of hugs to so many I knew; the Kenyans are truly warm and gracious, and really know how to make you feel welcome!

Dr. Dave opened with a warm and even funny speech about how much they have progressed as a team, and how he will commit to continue to help. Maureen reviewed the history of their society, and complimented her team on their help. She stressed the importance of patient and parent involvement. I also gave a brief speech to remind everyone that our foreign visitors were here to raise funds, so that we would have the money to start micro loans and scholarships through Save One Life, our nonprofit that works at a grassroots level in developing countries.

Flora spoke, Kevin spoke… it was very heart wrenching to hear of the loss of some children, but stunning to know even those who lost children are still working with the society so that other families would not suffer. These include Maureen herself, whose five-year-old son Jose died just four years ago.

Maureen asked Julie, Jeff, Kara and Mary to say a little something, so each guest got up and spoke. Jeff was very emotional in thanking everyone, as he realized fully his blessings in life compared to those with hemophilia in Kenya. Julie could barely speak as she was overcome with emotion, facing the towering strength and dignity of the parents, despite their losses and suffering; Kara and Mary thanked everyone for the privilege of letting them be a part of their lives.

After the speeches, we had tea and snacks, and Mary, Maureen and I handed out toys we had brought from the States. Stuffed animals are not common in Kenya, so these were a prized commodity! We also gave away kazoos, balls and T-shirts.

Julie had a brilliant and spontaneous idea: with all the patients present, why not conduct a home-infusion workshop? She simply got to work, and found her first volunteer. Many of the children have very hard-to-find veins, but Julie is a pro! Before she knew it, every patient in the room lined up for an infusion. In fact, we left her there to go back to the hotel to work out!

Kilimanjaro looms in our mind and I was getting a bit nervous not working out, after an intense two months of working out. Mary and I hit the gym and gave a good hour of cardio. We joined Julie, Jeff and Kara later than evening for a light dinner to review the remarkable day. “Having the good discussions” by the patients, and the home visits yesterday, have given them all a good slice of how Africans live with hemophilia, their obstacles to care and the culture that keeps patients quiet and uncomplaining.

Yeah, they are in love with Africa. I knew it would happen, as it happened to me, too, long ago.

Kenya Day 2: Return to Simon’s farm in Nyahururu

Nobody walks with another man’s gait. —Kenyan proverb

Tuesday, August 2, was Day 2 of our African odyssey. We were up early to have breakfast in the outdoor dining area of the Southern Sun Hotel. It was very cool, and we ate poolside and had a wonderful breakfast of hot tea, eggs, rolls and fresh fruit. Mary, Julie, Kara, Jeff and I reviewed our plans for the day, which involved driving to Nyahururu, over four hours, to see Simon, a hemophilia patient. Despite some jet lag, everyone was excited to have this adventure.

Maureen Miruka drove up around 8, along with a van, and several members of the Jose Memorial Haemophila Society—Paul Kamua, secretary at the society, Adam, and Isaac, all of whom have hemophilia. The biggest problem in Nairobi is traffic, which held us up for almost two hours. We finally broke free and hit the highway, unexpectedly spotting a lovely little herd of zebras alongside the road. The highway was deteriorating and very bumpy. We were jostled around for four and a half hours, until we finally came to Nyahururu. Along the way we passed lush countryside, and had a brief pause at the famed Rift Valley! Everyone admired the beautiful Masai blankets, did a little souvenir shopping and haggling before climbing back in.

Once in Nyahururu, we sought out Simon’s home. I had been here just last year to see Simon, and was really struck with how isolated he was. We climbed the rich red soil road, twisting and turning around every bend, rocks churning under our tires, until we reached his farm on top of a hill.

His farm gives a spectacular view of Kenya, and the sun was shining brilliantly. We piled out, and stumbled our way up the path through his farm. Scampering about were three yellow dogs: a mother and her two pups. One of the pups I easily recognized from last year. Now grown, he remained as friendly as he was last year, though his brother was completely untrusting. Chickens clucked about, and the family gathered around to welcome us.

Simon has a cell phone and texts me now and then, but aside from a cell phone, there wasn’t a single luxury. No electricity, no plumbing. We all used the outhouse, which was actually the cleanest outhouse I have ever used, and I have used many. There is something to be said for simple, optioned-style rural living. I imagine the stars are spectacular from his farm. Still, there is no doubt: Simon lives in total rural poverty.

As we sat down to a homemade lunch of fresh-killed chicken and nutritious mokina, a national dish made of pumpkin leaves, we all asked Simon questions about his knees, health and treatment of hemophilia. His knee remains completely unstable from the deterioration of the joint. Simon is one of the few in Kenya who knows how and is allowed to self-infuse. This is great, because it means he can infuse immediately when he has a bleed, which will spare him much pain and crippling.

As we ate, I looked about his interior: sheet metal roofing (very noisy when it rains), and two-by-fours covered with—get this—stapled cardboard. Very crude, very poor. Yet we ate delicious, fresh food that could have been served in any restaurant!

After lunch came a mug of steaming hot tea. Then a trip up the hill to the outdoor “mountain spring water” which pipes down to an outdoor pump. We can imagine that this is what our American ancestors had to deal with two hundred years ago!

Simon has been asking for a micro-loan so he can start a business, and our Kilimanjaro mountain climb can definitely help him accomplish this. I am really hoping to write within the year to let you all (or “y’all,” as Jeff likes to say) know that Simon got his micro loan and his business is underway. I’m counting on it, and it’s part of what motivates me to climb!

After a lovely afternoon with Simon, his brothers Richard and John, we gathered ourselves together and hit the road. Another 4.5 hours back to Nairobi and we were exhausted. Whenever we thought we were tired or sore, we all thought of Simon, what it must feel like to travel all this way to Nairobi for treatment, when you are also enduring a horrible bleed. It seems inconceivable, and made us silence any complaints. Simon, limping, in pain, still wants to start a business and do something with his life. For a brief time, Simon allowed us that rare opportunity to walk in another man’s shoes. Now we know what he needs—a micro loan—and now we can pool resources to make this happen.

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