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. 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.

See photos of the trip here.

Immediately, my sense come alive as I take in the scenery, which deteriorates rapidly as we enter. The mud and stick homes and corrugated steel-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.

Florence’s Story

One of the things I find remarkable here in Kenya are the questions patients ask me: Why does my knee hurt? Why do only boys get hemophilia? If I get a shot now, I will be well for six months, right? If my first child has hemophilia, then no other child I have will get it, is that correct?

Maureen Miruka, mother of a child with hemophilia, is determined to provide that education. She is at once shocked by the low level of understanding, and motivated to enlighten. One way to do this is by large family meetings. Another is by personal visits to the homes of families with bleeding disorders. Today we did both.

First, we shouldered past buses, cars and trucks on the congested Nairobi streets to visit Florence Odwar, a mother of five–two with von Willebrand Disease. Some parts of Nairobi are dangerous, and we cruised past slums, where I could not take a photo, because to lower your window might invite a quick snatch of your camera. Florence’s street is in a rambling but safe area. She welcomed our visit.

Her house is urban and small. A room that can only fit a couch and a chair, partitioned by a hung curtain, behind which I assumed was the bedroom, where she, her husband David, and children Moline, James, Nickson, Jovan and Georgina sleep. Seems impossible but they work it out.

David, Moline and Jovan have VWD. Rarely is there treatment. Jovan was diagnosed when his teeth were coming in and bled profusely. Afterwards, the entire family was examined. Florence was shocked. Even more than the physical suffering the three experience, there is financial. VWD infiltrates every aspect of their life.

See all the photos here.

Despite their obvious poverty, they are a hard working family. David is an electrician for a company; Florence is a seamstress, owning her own small shop for 10 years now. They earn about $200 a month. From that they pay rent ($62), school fees ($37), clinic visits ($13); they all take public transport and food costs are high. With each bleed, one parent must take time off from work, which forfeits their pay. Life is a struggle.

I was struck by Florence’s inquisitive nature, willingness to learn more about VWD, and determined to have a better life for her children. The children are ages 21, 20, 19, 9 and 5. All are doing well in school. James and Nickson want to be engineers; Jovan wants to be a pilot. If that fails, I think he wants to be Chuck Norris. I have never in my life been asked so many questions about Chuck Norris, whom Jovan things is real. We had a lengthy discussion about who would win in superhero fights (Mr. Fantastic could beat Chuck Norris, and Bruce Lee would beat Jet Li. Nobody could ever beat Superman)

The home visit was a great opportunity to evaluate Florence’s family for Save One Life and I am happy to say they are our first Kenyan family to enroll! It was also a great time to educate. We discussed many aspects of VWD and treatment, especially for Jovan’s terrible nose bleeds, and Florence asked for my book.

After a photo session which grew to include all the neighborhood children, we traveled on to a family gathering: about 13 families attended the first Family Day for the Jose Memorial Hemophilia Society-Kenya. I find most Kenyans to be soft spoken, polite and deferential. It was hard for them to break the ice, even with one another. The JMHS-K provided delicious food and promoted an atmosphere of community and trust. By the end, everyone was sharing their stories. Another Family Day was promised, with activities and education sessions.

Afterwards, the board members and I sat around, laughing and sharing our own stories about everything. There’s a real bond between parents whose children share the same chronic disorder. Maureen realized I had only been in Kenya for two days. “It seems like a week!” and I agreed. The bonds we made in two days will be unshakable and unbreakable eternally, or as long as hemophilia stalks the earth.

World Hemophilia Day in Kenya


The evening air in Nairobi is cool and crisp, and a chorus of frogs are singing as I walk back to my room, traversing a beautiful stone walkway through the lush hotel courtyard. One frog sounds like a frantic woodpecker on a hollow log, while others sound like little cell phone alarms. While I walk, I relfect on a remarkable day; World Hemophilia Day, in Kenya.

I arrived just 24 hours ago, and already feel like so much has happened. After 19 hours in transit, I arrived in Nairobi, Kanya’s capital, to be greeted by Maureen Nyangwara, mother of a child with hemophilia, her husband Sitawa, and two board members of the Jose Memorial Hemophilia Society, a new patient group. Maureen and I hugged like long separated sisters: we have kept in constant contact for almost two years, since her little Joseph died while in intensive care from nasal bleeding. This tragic loss was a catalyst for Maureen to take action, to try to ensure that no child die needlessly from bleeding in Kenya. She formed her nonprofit as a primary place for parents to feel heard, empowered and home. And today Kenya celebrated its first World Hemophilia Day!

The meeting took place at MP Shah Hospital, a private hospital that welcomes hemophilia patients. After touring the hospital, we arrived at the conference room, which began to fill with patients and staff. Soon there were about 60 people in attendance. Today would be the official launch of the JMHS. There were moving speeches by the MP Shah CEO and the Ministry of Health representative. Dr. Dave, the MP Shah’s hematologist and medical advisory board member, pledged to continue support to the patients and families. I spoke about the need for action by the parents: one or two families cannot carry the work that needs to be done by all. Though Maureen and I both founded our organizations after reaching a point of no return, I stressed that other families do not have to wait until they are in a crisis or pain to come to the Society and ask for hep or to offer help–come now! The Society needs their help and welcomes their ideas. I shared photos and stories from around the world, about how other countries with far less than Kenya successfully accomplished goals and improved care. Often, all it takes is one dedicated doctor and one dedicated parent or patient to move mountains.

Maureen then spoke about how Jose’s death changed her life, and how she will now work to bring better care to all. James , a spry 43 year old, spoke eloquently and passionately about what people with hemophilia can do–the emphasis of the day was Yes we can!

Later we visited the MP Shah hematology ward, where a beautiful new plaque proclaimed the inauguration. I was shocked and honored to find my name on the plague. I was then offered scissors to cut the ribbon to the new HTC center! And while we donate factor to Kenya from time to time, it’s the Kenyans who have done all the work, especially today. The day belonged to them, a celebration of loss, hope, and a compelling future when there will be factor for all. Not a bad start to this journey!

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