hemophilia in Kenya

Kenya Day 1: At the Harvest



At the harvest, you know how good the millet is. Kenyan proverb

I have been traveling to developing countries for 15 years and usually travel alone. When I reach my destination, my hosts become my companions for the duration. This trip is quite different: I have my daughter with me, and three other Americans I hardly know. Sometimes you worry about how newbies will act when confronted with extreme poverty, pain and all the inconveniences of the developing world. I didn’t have to worry. We’ve only spent two solid days together, but it’s clear we have bonded and are excited about helping Kenya, learning from its people, and the upcoming Kilimanjaro climb.

The only bad news is that Eric Hill and son Alex are stuck in Switzerland, when they should have arrived tonight! And worse, Eric’s climbing gear is missing!

But our trip has been uneventful as far as bad luck goes, and eventful as far as mission goes. Mary, Julie Winton (a nurse who works with BioRx) and I arrived Sunday after a 12-hour delay in Paris. Kara Ryan, 20, a medical student, and Jeff Salantai, who has hemophilia and also works for BioRx, had already arrived on Saturday.

We met Sunday afternoon with Maureen Miruka, president and founder of the Jose Memorial Haemophilia Society-Kenya, and her colleague Kehio Chege, who has a son with hemophilia. We mapped out the coming week in detail. Lots of patient visits, a TV spot, a meeting at the health ministry, and a meeting at the MP Shah Hospital.

So I’m back in Kenya, a country I have grown to love, for my fourth visit. It is lush, green, rich with red soil, and bustling with people. The Kenyans are soft-spoken and polite as a whole. With a population of about 41 million, there are an estimated 3,000-4,000 people with hemophilia. But only about 400-500 people have been identified. The country purchases no factor, and remains dependent on donations from the WFH and Project SHARE. Our goal is to visit the Save One Life beneficiaries, while introducing Jeff, Kara, Julie, Eric, Alex and Mary to Kenya, Africa and the needs of those with hemophilia.

On Monday we were up early in the surprisingly chilly weather, and headed out to visit patients around Nairobi. We battled the traffic (called “jams”) for 90 minutes, just to go a few miles! First stop was in a very deteriorated project, with trash piles and low-lying laundry wires. Jacob is a 30-year-old with hemophilia A, who is very crippled. We all crammed into his sister’s small home, and learned a little about his life. It’s hard sometimes to hear of patients’ stories of suffering and pain, when they have not had access to factor. Jacob has a small business, selling used shoes by the side of the road. He hasn’t been able to work lately due to the numerous bleeds in his leg. He earned about $80 a month.

He wants to set up a new business, “tent making.” We learned what he meant is a tent-rental business. But to do this, he needs capital to get started. Well, Maureen and I have already discussed setting up a micro loan program for the adults and young men. Rather than just give them money, which is tempting to squander, the micro loan will ensure they will pay back the loan by working through a bank. Part of the proceeds of the Kilimanjaro climb will be used to start the micro loan program.

Jacob was having an active bleed as we were there, and Julie, still very jet-lagged, skillfully gave him an infusion of factor in the home! It’s amazing considering this is not only Julie’s first trip to Africa and it’s only day 2, but it’s her first trip outside the US!

While she cleaned up the medical supplies, Jeff and Jacob compared war wounds!

While saying our good-byes, the neighborhood children gathered round. Mary played catch with them while I snapped photos and then showed them the photos in the viewer, which delighted them to no end. Dozens of children romped about in the project square, with no adults supervising them.

On to Michael’s house. Michael is a sweet-tempered, charming youth of 21, wheelchair bound. He lives in a very small home, just two rooms and a small kitchen. Michael suffered a stroke in 2008, and has had epilepsy since, in addition to his factor VIII deficiency. His father Anthony just lost his job, and his mother’s company is downsizing and she fears losing her job, and then home. They live life on the edge. Michael’s medical concerns have overwhelmed the poor family. He is paralyzed on half his body. They have no car, and must use public transportation, in all that traffic. We can only imagine how difficult it is to get this young man into a wheelchair, down the street, on to a bus, and then to a hospital. Julie looked at his CT scans and saw the damage done to his brain. “One half his brain is dead,” said his mother. Yet Michael spoke very well, and told us he dreams of being a doctor one day, or at least to work with the JMHS-K to help the children with hemophilia, like him. I think we all had tears in our eyes when we left.

Michael needs a sponsor desperately, so please consider sponsoring him!

Another patient we visited was Stephen. He lives in his aunt’s nice home, which is large and clean. His primary family lives “upcountry” and they have given Steve to his aunt to be raised. The mother, simple and uneducated, thinks Steve has an evil spirit living in him—why else would he have this mysterious disorder? The aunt works for a bank, and is not a young woman, and also cares for other relatives. Steve doesn’t get to see his mother or sisters very much. On top of all this, his father just died in May. The aunt showed me a photo of a tall, handsome man. Life is so hard and brief here!

Last of all, we visited the Odwars, who I have visited three times in three years now! Daughter Moline and son Jovan have von Willebrand Disease. We hugged and hugged, and I finally gave Jovan something I had been saving all year—art supplies. He is a prolific sketcher and artist! Our group was very humbled by their small home, yet impressed by their immaculate attire and manners. It was heart wrenching to hear that they were 6 months in arrears with rent payement, and were being threatened to be homeless. We quickly paid off the rent, which brought tears of relief. All too soon we had to move on.

At dinner, back at the hotel, eating steaks at the “Golden Spur,” which ironically is decorated like the South West, Texan Jeff happily said he would sponsor Steve. As always, when you meet these amazing people, who live in poverty, with personal loss, pain that never yields, and a gentle grace, you come away feeling more grateful, more blessed, more compassionate and more powerful—you realize you have the power to change someone’s life.

I am already feeling a harvest from our trip, and know that these new friends in our lives represent the rich millet that can only produce such a harvest.

More bogging will come soon!

Joy in the Morning

I flew into Tanzania today, a quick one-hour flight from Nairobi. I was greeted so warmly, so kindly by the members of the Tanzania Hemophilia Society, who made me feel instantly welcome and part of the family. Richard Minja, founder, and I have been communicating for four years, working to establish the society, and when we met he greeted me with an unabashed hug! We feel as though we have already met; so strong are the ties that bind people who live with bleeding disorders.

But first, let me finish telling my tale of Kenya. I wish I could bring you all with me to experience what I experienced: glimmers of hope in patients who were desperate for care, for a solution to some very difficult problem. Overall, Kenya has a great physician and hospital at Kenyatta Hospital, but the problems faced by Kenyans with hemophilia are institutional, cultural and logistical. Overcrowded emergency rooms mean that patients wait hours before being seen: those with serious bleeds risk life itself. Factor often is not available, and what little there might be must be used sparingly. The medical staff devote their entire lives to helping patients but even they cannot overcome a culture in which patients are meek, do not speak up when they are bleeding, and do not challenge the current system. The traffic in Nairobi pretty much dictates everything; your entire day is planned around how best to avoid traffic. You can literally sit for hours, inching along. Patients can never get to a hospital quickly this way. So many patients live very far from the hospital, and many do not own cars. How can they get from a rural house on a long, miles long red muddy road to a highway and then into Nairobi when they have no car and no reliable public
transport?


So we know what we must do.

On Thursday, I flew back from Zanzibar, and pretty much just sorted myself out the rest of the day, trying to keep up with email. Maureen and her partner Sitawa picked me up at the airport and we met with Salome and Dolphin, two members of the board of directors, to finish plans for the big charity event they were holding Friday.

On Friday, April 24, we started our day early by visiting Mrs. Eva Muchemi, of the Diabetes Management and Information Center. She was wonderful! Diabetes and hemophilia actually have a lot of things in common, as both are chronic disorders. Eva gave us many tips in running a nonprofit and establishing family-based programs for education. One of the coolest things I learned (no pun intended) was how to create a “traditional cooler,” to store insulin or any biological product. Using two tin cans, charcoal (abundant in the developing world), and a rubber ball as a stopper, local artisans can make these insulated cooler cheaply. In that way, patients can store insulin at home!

Next stop, the hotel where the event would take place, to check on preparations. The rich smell of roses filled the air and I can see that Maureen and team pulled out all the stops for this event, which is in memory of Jose, Maureen’s firstborn, who died just shy of his sixth birthday on April 25, 2007. Rather than submerge herself in extended grief, she empowered herself to create this society to ensure that no other child should die of untreated bleeding.

Then, Salome, who is a nurse at Kenyatta and also a mother of a child with hemophilia (I know, a godsend) and I went to visit Charity, a vivacious mother of three who lives in Lumuru, on the outskirts of Nairobi. As we finally disentangled ourselves from vicious traffic, and patiently endured a police roadside checkpoint, we zoomed along the highway. Immediately the countryside unfolded, and a beautiful Kenya revealed itself. It’s a double-edged sword: along with the lush countryside comes increased poverty, though I have to say that rural poverty is quite different than urban poverty. What you forfeit in modern conveniences, you make up for with clean air, space, and peace. But life is hard there.

I snapped dozens of photos long the way, which will have to wait till I am back in the US, where we have high speed Internet. It takes too long to upload photos. But what photos! Wait till you see them all.

Turning onto a rusty and rock-encrusted dirt road, we bounced and banged our way to Charity’s house. We passed donkey-pulled carts, women balancing immense loads of vegetables or firewood on their heads, and random donkeys grazing on the thick grass. Finally we arrived.

Charity is a woman with a dazzling smile and lovely, British-clipped accent. She was so excited to have an American visiting her home-what an honor for her! But it was an honor for me. How often do we get this chance, to share intimately in the life of a struggling soul? Out of the house shyly emerged her children: Patrick, 14, Daniel, 11 (who has severe factor VIII deficiency) and giggling Ann, 5. Another cousin tagged along. Daniel actually looked in good shape, though a bit small for his age, while Patrick is slim and robust, strong. We had a tour of the home, the separate “kitchen,” which is a wooden shed, inside which was a steaming pot of soup. The smoke was really thick inside: directly above the pot was a cord of wood, which was being dried by the smoke. Nearby were vats of water–their household supply. Back out in the bright sun, we went to the rear of the house, where I was surprised to see two cows, which give fresh milk daily, and a cute calf. A small cat followed us about. The kids started to loosen up and we took photos.

Inside, we listened to Charity’s story: Daniel misses a lot of school though he is a good student. Education is absolutely paramount to them, for it ensures a future for the entire family. There’s no such thing as welfare for the elderly. You are cared for by your family or not at all. So you’d better believe these kids get educated. Daniel’s knees show signs of arthropathy, especially in the left knee. Unbelievably, though they have electricity, there is no TV, no washing machine and no refrigerator! Try to imagine no refrigerator, especially for a child with hemophilia. A small one costs $200 and we pledged to source finds for one. The kids smiled broadly when I whispered this might mean keeping the occasional Coca-Cola in the house for special occasions.

Patrick wanted to see photos of my family, and my pets, and when I handed him my iPhone, he wasn’t phased by the technology. He immediately got the hang of its touch, and skimmed through my photos, asking such intelligent questions.

David, the father, came by, limping. He had been mugged two years ago, and left with a shattered leg and has been unable to work. When I broached the subject of their income, I think tears came to his eyes. For a man not to be able to support his family seemed wrong. I looked about the humble abode, seeing how clean and neat the children were, the wonderful food Charity placed on the table for us to eat, and how attentive they were. Charity earns $35 US a month selling vegetables from their small farm out back.
(Salome inside Charity’s home)

We will enroll them in Save One Life, which will almost double their monthly income. Charity said they need money most for transport to the city for treatment. They almost always will need a taxi or to pay a driver.

As we spoke, I glanced up at the cupboard next to me, on which was an appropriate plaque at eye-level: “Weeping endures through the night, but joy comes in the morning.” Psalm 30:5. So appropriate for a child with savage joint bleeds, and a mother who holds him all night helplessly. To see their smiles today meant we have brought some measure of joy.

When it was time to leave, there were hugs and the kids were all smiles. In fact they piled into the back seat of the car for a lift to homes near the highway, so they could visit a friend. And we returned to the congested city for our big charity event, which I will need to write about in a day or two. Stay tuned!

From Church to Kibera


I am writing from Zanzibar, an island off the coast of Tanzania for two days of R&R. The very name Zanzibar conjures up spices, for it once produced 66% of the world’s cloves, and myriad other spices. It also served as the launch pad for the explorations into the interior by Livingstone, Richard Burton, and John Hanning Speke. Watch “Mountains of the Moon,” an excellent adventure movie, to get an idea of old Zanzibar.

Now, there is terrific poverty surrounding resort compounds. I am grateful to be here complements of Andrew and Julie, parents to a toddler with hemophilia. I’ll be seeing them tomorrow night for dinner and get to hear their story more. They live in Nairobi, Kenya, but own the Bluebay Beach Resort, a world-class resort on, what Andrew’s father Steven correctly said, is the most beautiful beach in the world.

A few days ago, Sunday, I attended Parklands Baptist Church for the 8:30 and 11:30 services, as I was invited to speak to the congregation about my visit. What an amazing experience! With only a half hour break between services, I enjoyed the singing, spirit and sermons so much I am reminded of what Albert Einstein once said of his theory of relativity: “An hour on a park bench with a pretty girl seems like a minute; a minute touching a hot stove seems like an hour.” Six hours of church flew by. We prayed, sang songs in Swahili, and the music–I find most Africans love music and have its rhythms and words woven into their lives. My thanks to Pastors Simon and Ambrose for allowing me to speak about hemophilia and our mission to their congregation and to participate in their energetic and passionate services.

After church, around 3 pm, we quickly changed into hiking gear, grabbed a bag lunch to eat in the car, and then trudged into another adventure–the Kibera slum. With approximately one million people living in crowded, unsanitary conditions, the slum is the largest in Africa, and the most studied. There is a documentary about it–I haven’t seen it yet but intend to. It’s a place that completely fascinates me. When we turn the corner, off the main road, and head into the dirt road leading down to Kibera, I feel like we are being swallowed up into the pulsating entrails of a massive, living, writhing organism.

Immediately, my sense come alive as I take in the scenery, which deteriorates rapidly as we enter. The mud and stick homes and corrugated tin-roofed homes lining the road close in on us, and the crowd of people walking by thickens. The road gets bumpier and tighter. Immediately there are the smells: sometimes a ripe, thick stench of garbage, then the welcomed acrid waft of charcoal burning.

We greet David Lerner, the lovely young man who works for Compassion International, a Colorado-based nonprofit, who will be our guide into the slum. He climbs into the car and we exchange greetings. David, only 23, grew up in Kibera, and has such a worldly and mature perspective at such a young age. He is handsome, eloquently spoken and has had harsh life lessons. He is a survivor, someone with a perspective that no one I know has. He is remarkable; so young, so organized, a devout Christian. He helps run a school of 208 children, all sponsored by people in developed countries. I told him I want to come back and spend a day at the school. He gave Maureen good ideas about child sponsorships programs, and how they are run. Maureen will be running our program Save One Life, and it appears that David’s sponsorship program is run very much like ours.

After touring the school, we visited Anna, a mother with eight children. It’s hard not to be moved visibly by their poverty. Everything seems grey, including the children, covered with a layer of grime and dirt. She breast-feeds her baby while the other children play within a few feet. They giggle and grab my hand, hiding behind one another as they catch a peek at us. She sits in front of her house, selling vegetables, cigarettes in crushed, used packages, and charcoal in white buckets. Anna is a good mother, and sends her children to school. They don’t have hemophilia, and are not registered yet with David’s school. But he knows them and they give us a photo op. “Want to go inside?” asks David, gesturing to their tin shack, the door to which is barely covered by a torn curtain. I hold the hand of her little daughter who leads me in. The 10′ by 10′ windowless dwelling has one bed, a small charcoal pot–burning with coals–many bags of clothes filling the dirt floor, and the biggest surprise, her husband, lying on the bed. He’s lying on the bed, having a siesta while she is selling, breast-feeding and watching all the children. Where they all sleep is beyond comprehension.

We are sometimes harassed by the local guys, who are obviously drinking. I realize we are in the “business district” of Kibera. In 2001, when I came here, I was in only the residential area, and rarely saw grown men. So there’s a bit of tension. You must always be alert and wary. When we get into the car, Maureen fans herself in the front seat, as we must keep the windows up constantly and the sun is hot. We inch along in the car, with Sitawa driving, and move with peristaltic action, as men bang the hood sometimes. In Swahili they shout, “Hey! Why are you doing that? Open your window instead!” Sitawa and Maureen laugh. I never feel like we are in danger, but surely if you do something stupid–argue with them, get angry with them, get out of your car at the wrong time–you risk being hurt or harmed.

How to describe Kibera? An economy of poverty; children toddling everywhere, people lounging by their homemade shops, selling vegetables and charcoal. Goats strutting about freely, starved dogs, barefoot children with runny noses; and the occasional good chuckle: we pass by the “Beverly Hillz Salon,” in the midst of mud and garbage strewn lots. I realize that Kibera isn’t just a place where the poor live, it’s actually a thriving economy, based on bartering, marketing and hard work. It has schools, markets and its own radio station. It’s like no other place I’ve ever seen. I have to afford some respect to its inhabitants, who survive against all odds, and certainly in conditions we as Americans could not tolerate for a moment. As we depart, our car slamming against potholes and inching alongside people walking purposefully, dust swirls up from the unpaved roads, and we know we are simply inches away from misery, inconvenience, disease, alcoholism, crime and hardship.

When we are spat out of the slum and hit the highway, it seems already worlds away. We let David out, and he will bicycle back to the slum. We spent only two hours there and it was overwhelming to think that David has spent his life there and could possible spend the rest of his life there, a diamond in a mountain of coal.

We depart for the evening, each of us to our own worlds, wondering what it must be like to live in the world of the other.

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