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. We arrived Sunday after a 12-hour delay in Paris. Kara, 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 Hemophilia 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, and Alex 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. We played catch with them and 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!

When Everyone Lifts


Few burdens are heavy when everyone lifts. —African proverb

I am in Kenya at last! For the first time, I am bringing a team with me. On this trip, to Kenya first, then to scale Kilimanjaro, everyone lifts!

We had a long flight: Julie Winton, a nurse with BioRx, arrived in Boston on Thursday, and I drove down to meet her and whisk her away to my home. We reviewed the gear and equipment for Kilimanjaro, and weighed our bags. Mine was 16.5 pounds; hers was 44.5. While I gloated, Julie pointed out how little I had by way to thermal/arctic clothing. She scared me into buying more. She said it was -5 degrees on Kili!

So we packed and repacked all night, and on Friday morning, we drove to EMS to buy a sleeping back liner and heavier socks. Much better!

At 3 pm our ride arrived. I was shocked to see a stretch limo–a surprise from my assistant. And we need it–we had six huge bags, filled to the max, and two carry-ons each, also filled.

A seven-hour flight to Paris only to face a delayed flight by 12 hours, a rented hotel room in Paris, then an 8.5 hour flight at 11 pm last night, landing us in Nairobi this morning. Julie didn’t sleep all night.

Nairobi is beautiful: the air is cool and dry, the streets clear for once. Cattle are shooed along by a barefoot boy, alongside motorbikes and cars that seemingly mocking him as they whiz by. We pull up to the Southern Sun Hotel, just last year the Holiday Inn. When I check in, the staff says, “You’ve been here before.” Two other times, in fact! I know this place well.

We relax, unpack. Later, our colleague, Maureen Miruka, founder and president of the Jose Memorial Hemophilia Society visits. While sipping tea, we discuss how we will most likely invest the up to $45,000 we have gleaned from our climbing proceeds. For that is what we are doing: investing in the future of hemophilia in Africa.

While Kenya is a model African country, the country is currently faced with an influx of refugees. Conflicts in the Horn of Africa have driven more than 1,300 refugees a day, the vast majority from embattled Somalia, into the Dadaab refugee camps in Kenya – now the world’s largest humanitarian crisis, with almost 400,000 refugees in three camps designed for 90,000.

Short-term efforts by humanitarian groups include improvements including safe water and sanitation, improved security, and access to health services and emergency shelter.

For now, this doesn’t touch us. We will focus on the crisis of hemophilia. At dinner we sat around, told stories, and prepped for tomorrow, when we will go to the homes of the poor, to see how hemophilia is not just endured but survived.

Interesting Book I Just Read
A Stolen Life by Jaycee Dugard

I have to review this book with two hats: one as a human being and mother; the other as an editor. And it wasn’t easy in either case. Jaycee Dugan’s story has made headlines for the past two years; in 1991, at age 11, while walking to the bus stop for school, she was tasered and abducted by a married couple. For the next eighteen years, she was held in crude captivity until her rescue in 2009. She suffered years of what can only be described as sexual and psychological torture, living in a tent in the backyard, unseen by the world. She survived by learning to adapt, giving in to the perverse needs of her captors, and eventually gave birth to two daughters, the first when she was only 14 years old. Her case made headlines also as a horrific example of the failures of the legal system: Garrido was a known pedophile, and parole officers who visited the home numerous times never once looked in the back yard, where they would have seen Jaycee.

Jaycee’s memoir is honest, direct, and spares no detail. You will marvel at how a child survived such abuse; you may cry as you read this, or even stop reading it. Jaycee was never allowed to use her own name, was deprived of all books, TV and human contact other than Philip Garrido for months. Eventually, she lived vicariously through the TV and internet, and gained access to the main house, but always returned to her crude tent, where there was no plumbing or luxuries. By complying, she won favors, such as outings and even helping the Garridos run a printing business. She never, ever forgot who she was, that this was wrong, and prayed that someone would recognize her. She is filled with longing for her mother, which is perhaps the most poignant part of the book. The book is a testament not only to Jaycee’s strong spirit but to the human spirit and how, even in a child, it can triumph over the worst of circumstances. Jaycee is not filled with hate, does not feel entitled, and has moved on with her life. She is now a lady who is dignified, calm and impressive.

As an editor, I do need to point out objectively that the book is not well written. It took only a night to read, was riveting, but uneven, choppy and skips vast amounts of time in her captivity. It’s told only from her point-of-view, which is fine, but the book would have been so much better in the hands of an experienced writer who could have brought more of what was happening with efforts to find her, and her mother’s experience. The book feels like it was written by a child, and in many ways it was, as Jaycee’s education ended so abruptly in fifth grade, and she endured so much. More time was spent describing her numerous pets than her own children—these are odd things psychologically, and even endearing, but makes the book a bit frustrating to read. Still, I highly recommend it. Jaycee is a classy lady and perhaps the bravest one we can imagine, to share her experiences. I think she may have shared too soon, however; perhaps over time she can pen another, which will provide more insight from her as an adult. My rating refers to the content and my regard for the author, and less the style. Three stars.

Into the Heart of Africa: Visits to Villages

Maureen speaking with doctors at Murang’a

Tuesday April 27

Today was a field trip, outside of the bustling, clogged streets of Nairobi. We headed to Murang’a, a town about 90 minutes away, off on the highways pitted with deep and numerous potholes. The shoulders of the highways are crumbling and soft so in dodging the potholes, we have to be careful not to veer too close to the shoulders or we will need up in a ditch.

You may think Africa is hot (the very name means “Away from the cold”—A frika), but Kenya is quite pleasant, with cool breezes, mostly dry air, and even chilly in the evening. No wonder so any settlers came here and stayed. The climate, the rich red soil, the friendly people make Kenya a country where people dream of living.

Maureen Miruka, mother of two-year-old Ethan and founder of the Jose Memorial Hemophilia Society, was our fearless driver. With us also was Paul, the 24-year-old administrator of the Society. How nice that Maureen hired him—he has hemophilia and many of the young men with hemophilia cannot hold down jobs. Remember that there is no factor in Kenya unless it is donated, and the donations are only enough for a few.

Our first stop was the Murang’a District Hospital, where we met the gracious Senior Nursing Officer Danny Mengai. Joining us later was Dr. Nguyo. Maureen had met them previously, explained about hemophilia and this time brought with her their very first ever donation of factor! This is factor that my organization Project SHARE had donated to her organization. This was the kind of teamwork and outreach I like to see. Imagine: Murang’a has a higher than normal concentration of people with hemophilia and there has never till now been any factor in the hospital. And you can bet that fresh frozen plasma is hard to come by as donating blood is not a tradition in Kenya, or in any African country.

I learned today that a big teaching opportunity for the JMHS would come in December: this is when the vast majority of circumcisions are done. Why? I asked. For religious purposes? No, Maureen replied: school holidays. Boys are circumcised around age 12 and this is when we can get referrals for bleeding disorders to the Society. Dr. Nguyo assured us he would check with Maureen at that time, and also refer anyone suspected of a bleeding disorder.

Back in the Toyota and then on to visit patients. This was our very first official field visit—sorry, the second. We must give Paul credit. He had visited previously by himself to do the groundwork, and take down patient information for Save One Life. And he did an excellent job! Our goal is to start enrolling patients from Kenya, and ask anyone reading this blog to consider sponsoring a child form Kenya. The needs are terribly great and it won’t take much to change their lives.

Take Peter for example. Just down the street from the hospital, on a red dirt road, in a small apartment lives Peter, age 19, with hemophilia. He is thin and speaks softly, like most Kenyan boys. He was so curious about his condition, and wants to be a doctor when he grows up, “So I can help other people like me. Because I know how they suffer.”

That’s an understatement. I am not sure we can understand how much these children suffer, with no relief, night after long and desperate night. (Photos: Peter; his kitchen; Me with family)

Let’s imagine what it is like for Peter when he has a bleed. There’s no money to get to the hospital. He has no crutches, of course, no wheelchair. He remains housebound. He tries to hide it from his distraught mother. She is single, and caring for Peter, and his brother, who has emotional problems as well as hemophilia, and also has adopted her two nieces, abandoned by her sister. The mother makes only about $20 US a month washing clothes and housekeeping for people. Peter’s bleed worsens, as does his pain. At night they all sleep in one room (the only other room they have, which also functions as a “kitchen,” because it has a charcoal pot in it) probably a few of them crammed into one bed. If anyone moves, this sends shooting, excruciating pain from the bleeding joint. Peter can’t get up and watch TV as a distraction, or Facebook, or do Wii, or pop a painkiller, or grab ice from the freezer or treat himself to a Coke. They don’t have a refrigerator, and own nothing but the basics—a table, chairs, couch, a bed or two, a boom box. If he gets up he’ll wake everyone. And in Africa, kids don’t whine and demand and complain. They suck it up with dignity. He lies there all night, trying to control the pain. The last thing he wants is for his mother to find out, which will add to her worry and suffering. He learns to be stoic and fight the pain, because there is simply no other choice. This bleed goes on day after day and night after night. It finally subsides… until next week, when this scenario happens all over again.

This is his life, and he cannot imagine any other.

We record his family history, ask him about his schooling, and his plans. We learn that his brother is in a mental ward. The entire family was terrorized last year during the post election violence. Thugs entered their home, set it ablaze, and chased them out into the streets. This is a nice, Christian, impoverished family, with two young men with hemophilia; they deserve nothing of what has happened to them. The younger brother, already fragile, is suffering from post-traumatic stress disorder. We make plans to go visit him. He’s ready to come home, but the family has incurred $350 in fees and like most developing country hospitals, the patient is not released until the bill is paid. You hear that right. Peter’s brother could be there indefinitely. We’ll see about that.

Who wouldn’t want to sponsor Peter? What a lovely young man; so sensitive and sweet, so gracious and kind. If he were placed in America, there would probably be nothing he couldn’t accomplish with his winning perspective.

The road calls, and we soon leave, after first handing out some presents to the family. On to the next patient: Peter’s uncle, also named Peter. He is older, with a family: wife and two children. He lives, well, basically, in a jungle. We park by the side of the road, surrounded by banana plants, overgrowth, trees and vines. Someone actually lives in that thicket of vegetation. We pull over under a big tree and a crowd of children gather, from the other side of the street. They giggle and whisper, “Mzungu!” and cover their mouths. What does that mean, I ask Maureen. Maureen smiles and says, “White.” Not many people like me make it out here, I guess.

I dissolve our differences by hauling out my stash of Tootsie Pops. Never, ever travel in developing countries without them. They withstand the heat and luggage manhandling, and are beloved by everyone. I hand out one to each bystander and immediately have fans!

We should have brought machetes because to get to Peter the uncle, we have to step over rocks and push back the big banana leaves. A short walk down the twisty sort-of trail and we arrive at their plot of land. Such poverty.

A split-log home, tin roof, muddy ground. The floor inside the house is missing; it’s just mud. There is no electricity. There are indicators of various levels of poverty and this is one key: do they have electricity? Believe it or not, you can do without plumbing. An outhouse will do and most people in the villages have them. But when you don’t have electricity…. You might as well be living in the 1800s. No, even earlier, in this case.

This family owns nothing, nothing. No vehicle, hardly any furniture. A homemade chicken coop housed a few chickens that had no food or water and the heat was growing. I felt for them, sadly. They cackled unrelentingly. A dog was penned in the back, also in a homemade kennel, with hardly any ventilation, whining to be released. The children padded around barefoot, the wife was a bit cautious, not too friendly. (Photos: the outhouse; Peter with family)

I gave the children the customary Tootsie Pops, which they eagerly accepted, and a superball and a toy kitten that shook when you pulled his tail. They were frightened by the toy at first. Then they thought it hysterical, and they made it shake over and over. I had rescued some toys from the CVS store which operates right beneath my office. Apparently, they ditch whatever they don’t sell every month: perfectly good toys, baby items and medical items. I retrieved toys for kids, baby strollers, thermometers, heat wraps, you name it. Yeah, I am a Dumpster Diver and proud of it. Everything is neatly wrapped in clear plastic bags and in perfect, new condition. And these kids had a ball with the toys.

After our interviews with Peter, we headed for the next house. Also perched in a jungle-terrain, on a hill, Charles’s home at least has electricity. And the animals look well cared for. We were greeted by the father, Sampson, an elegant elder man, his wife, who eyed us warily, and later told us this was the first time she ever met anyone else who had a child with hemophilia (! She must be about 60), Charles and his new wife, Hannah.

Charles approached us on a crutch, with obvious crippled joints. But what a nice young man: age 24, speaking fluent English (Kiswahili is the national language but most educated people—meaning grammar school and high school—can speak English as Kenya was once an English colony). Charles shared so much with us: his hopes to return to college and study electrical engineering, because he has a knack to fix anything, and he longs to contribute to his family. His parents are elderly. How much longer can they work and support him? It’s such a source of shame for an African man to be supported by his own parents. Hannah was sweet and gave me a little tour of their farm. The animals were all housed in self-made, split-log cages, but really well done and humane. A cow, goats, chickens and a dog. As clean as can be for living in jungle-like surroundings. They don’t have a refrigerator and Charles could really use one for ice for his joints. He lives so far from any hospital and they of course don’t own any kind of transportation! Not even a horse.

We were so impressed with the family. So good, high hopes, willing to work hard. Charles needed $350 to get his school fees paid for so he can return and get his degree. He just doesn’t have that kind of money. People like him, Peter and all the others we met live day to day. It’s truly survival. And when thugs burn your house down, or the rains come and wash away your farm or crops, you are really threatened with starvation and just pure survival.

We just cannot imagine their daily lives. I have a hard time, and I have seen it in front of me. How do they do it?

And yet I never hear a complaint, or curse. The only think I hear are blessings: May God bless us for our work, may we have a safe journey, thank you for helping us. Now maybe you can see why I return over and over. Despite their poverty, they have a richness many of us in developed societies lack.

We parted on such happy terms, and we all chattered on the way back about what a diamond in the rough Charles was! Peter too, in a different way.

We visited two more families, Stanley, a grown man, and Derrick, a one year old and actually Paul’s nephew. By then it was really growing late and I was out of Tootsie Pops and just about anything else in my purse that I had given away.

Our last stop of the day was at a home of a better off family. They have a proper concrete home, electricity, and the father is employed as a teacher. The son with hemophilia neatly dressed with shoes. We had a nice courtesy visit, and afterwards, to show their appreciation, the mother presented Maureen with a magnificent rooster!

They popped the rooster into a plastic bag, tied the top and carried it out to the car, its crested head popping out. When they opened the “boot” (trunk), the animal lover in me sprung out. We just can’t put a rooster all trussed up in a plastic bag into a hot trunk! It was 90 degrees and we had a two-hour journey back on horribly bumpy roads! The poor thing…

So I rode with the rooster in my lap, all the way back to Nairobi for two hours at night, petting it as if it were a cat. The doorman at the Holiday Inn was pretty surprised when he opened my door to let me out!

I’d call it a successful day all around for Save One Life and Save One Rooster.

(Please consider sponsoring one of the families mentioned above! Just $20 a month. See http://www.SaveOneLife.net)

Laurie interviewing Peter
Peter’s family
Peter
Laurie with Peter’s family
Peter’s uncle who also has hemophilia
Charles and his wife
Charles’s kitchen
Virginia and Derrick
Laurie and Maureen and the rooster!

Simon’s Story

Red dirt of Kenya
Rift Valley


Today we met a very special person with hemophilia, who touched us deeply, and reminded us of why we do the crazy things we so—like driving about three hours outside of Nairobi, deep into the Kenyan countryside just to meet one patient. Well, this is why we call our nonprofit “Save One Life.” It’s all about one person at a time.

You cannot separate Simon’s story from the logistics. Sure, he has hemophilia, as does his brother. He’s 26. His wife left him, and he now lives on his mother’s farm. He has the usual untreated bleeds, and hobbles about on crippled legs. We wanted to meet him because we knew he lived in difficult circumstances. Total rural living; you might say primitive, if you judged him by the average American standards.

We headed out at 8 am with Maureen Miruka, founder of the Jose Memorial Hemophilia Society, driving. With us were Paul, a 21-year-old with hemophilia, impeccably dressed as always, and Jeff, our videographer. They picked me up at the Holiday Inn, and off we went.

Over two hours of driving on a highway, dodging the worst potholes you can imagine. The shoulders of the road drop swiftly, so we have to be careful not to veer off. It was like a high-speed obstacle course! Left, right, fast, slow, then the random speed bump. The speed bumps (or “sleeping policemen”) are not marked, and so blend in with the road, and can cause severe damage. The ride seemed to take a lot longer than two hours.

We took a short break to see the breathtaking Rift Valley, 3,600 miles long, and an important source of fossils.

We arrived in Nyahururu, far north of Nairobi, a bustling town. As always, the Kenyans are dressed well, and walking, walking, walking. It seems that everyone walks in this country. I was surprised to see a long line of young men with motorcycles, just waiting. This was local transport, and in a minute I would find out why.

We spotted Simon under a gas station sign, waiting for us. I gave up my front seat when I saw how painfully and slowly he was walking, to give him more room and excluded room. Simon would show us how to get to his home.

We turned the corner to Simon’s street. The street is a dirt road off the main road. The red, rich soil of Kenya covers every inch of this long road. Up we went, as the road ascended and we dodged not potholes, but regular bikes with massive loads of grass or wood, their drives pushing them resolutely upwards. Or women and children carrying huge loads of potatoes in sacks, supported by bands around their heads. Or cows, stumbling down the road into town.

We spun in the soil, which was muddy at times, and began to wonder how on earth Simon could manage this. We finally arrived at his farm, perched high on a hilltop with a spectacular view of Kenya. To get to his farm you must climb up another dirt pathway strewn with rocks.

The logistics of getting him help for a bleed are mindboggling. When Simon gets a bleed, this is what happens:

Simon, in pain, has to either walk down the dirt path to the dirt road, then walk over three miles on this dirt road, down the hill and into town. Then he has to wait for the local bus to drive him to Nairobi, to the only hospitals that know how to care for people with hemophilia. Our drive took over two hours, and that was going fast. On a bus, you can expect to take two to three times longer as it makes stops, and goes slower.

All the time, Simon is in great pain.

We arrived probably with our mouths gaping: the farm is rustic but pretty and what a view! His mother greeted us, but wasn’t smiling, the way Kenyans usually are when they smile. Indeed, the entire family was grim, and tight-lipped. “They are stressed,” Maureen said to me aside.

We sat inside the small home (we would call this a shed) where his mother lives. I glanced around and noticed the corrugated tin roof (nothing new there; this is a given in the developing world) and cardboard. The walls were split logs, and the “wallpaper,” or covering, was cardboard, through which the light peeped in.

We chatted with Simon a long while, recording his family history and discussing his bleeding pattern. This would give us the necessary information to register him with Save One Life and find him a sponsor. Jeff also gave him an interview, and Simon spoke in Kiswahili, the national language, as his English is very limited. He shared his frustration, not at hemophilia, but of the incredibly long distances he must cover just to get some kind of help.

It was clear to us all that Simon needed to keep factor at home. To my delight I learned that he had been taught to self-infuse. But the government of Kenya buys no factor, and so there rarely is any available. Imagine traveling all that way in terrible pain only to arrive at the hospital and be told there is no factor! Or, come back tomorrow for your FFP.

Simon’s mother surprised us with a wonderful home cooked meal: mokimo, a national dish. It was the only meal we would eat all day (and only my second meal in two days!!). Things started to lighten up a bit. We presented Simon with a gift of factor VIII; we shared how Save One Life would provide funds for transportation. And we pledged somehow we’d keep him stocked with factor. By the time we shuffled back to the car, everyone was beaming, like a little ray of light brightening his future.

Before we left, we stopped at the local pharmacy where I bought Simon syringes, needles and medical tape. Things we so take for granted are not free here! And some cash so Simon could ride one of those taxi-motorbikes back up the hill to his home.

The ride back was both sobering and exciting. We had defined ways to help this very special man.

Our day was far from done. The ride back—three hours again—was only to plan what to do about another young man, age 21, hemophilia A, in a mental institution. He was placed there following the post-election violence that engulfed Nairobi last fall. This young man’s home was invaded, ransacked and then burned to the ground by electrified hoodlums, as many homes burned all around. I don’t know his whole story: perhaps he was chased, terrorized. Whatever it was, it left him so traumatized and depressed, he had to be committed. We heard he was able to leave now, following two months of treatment.

The problem? His mother, single, with two boys with hemophilia and two nieces, has to pay $340, a fortune, perhaps more than what she makes in a year. The son would not be released unless this was paid. This is the way it is in developing countries. We actually drove at twilight to go see him. We were allowed into the padlocked Men’s Ward, and the rank smell of human beings unable to care for themselves assaulted us. Lying on cot after cot were young men, about 25, all heavily sedated for the evening. The boy’s mother was with us as we tried to wake he son. He awoke and stared at us blankly, through drugged eyes. He looked so small and helpless on the old, thin cot. My God, I thought. This could have been my 22-year-old.

I made the only decision I possibly could; I gave the money to Paul, and tomorrow (Thursday) he would go with the mother and bring this poor child home, where his family could care for him.

This was a day of pure experience and exploration in the lives of two young men in desperate need. We cannot fix everything or everyone, but our motto at Save One Life is “To save one life is to save the world,” and that works just fine for me.

 

Simon
Maureen, founder of the JMHS
Laurie buying ancillaries for Simon

Jambo from Kenya


It’s with great pleasure and joy that I’ve returned to Kenya, in east Africa, to visit the patient groups and the patients I have grown so fond of over the past nine years. I first arrived in 2001, returned again last year and was eager to not wait eight years before returning again!

Kenya is best known nowadays in America for its elite athlete runners (one just won the Boston marathon last week) and as the ancestral home of our president. But it is very important for hemophilia care as its national hospital has become a training center for many in east Africa. There are an estimated 4,000 people with hemophilia in Kenya, and about 400 identified and registered. Yes, there is a long way to go in providing care, but seeing where it has come in nine years, it has been making steady progress.

I landed late last night after a six hours flight to London, an overnight stay and then an eight+ hour flight straight to Kenya. I was greeted by Maureen Miruka and partner Sitawa, parents of Ethan, who has hemophilia. Maureen founded the Jose Memorial Hemophilia Society to help organize patients with bleeding disorders and to provide programs that address their needs. Jose was Maureen’s first son, who died three years ago that same evening.

My first stop today was the Kenyatta University Hospital, to visit with the chief hematologist, Dr. Walter Mwanda, and the Kenya Haemophilia Association. We had a wonderful meeting and it was exciting to get caught up on the many outreach activities planned, and the ideas of their young president, James Kago, who has hemophilia. What devotion: James just became a father for the first time on Saturday, and here he was, attending to affairs of the state! Our meeting, originally a courtesy call, lasted three hours. We all share a deep passion for helping those suffering with hemophilia in Kenya, and it showed in our bubbling over of ideas and concerns and a pledge to help the KHA and all patients. (Photo: Dr. Wanda and KHA)

Next stop: a visit with James’s new baby girl Tiffany! It’s been a long, long time since I have held a newborn and there is perhaps no greater joy.

Next stop was to meet at my hotel with Maureen and James, and also Geoffrey Mosongo, a young man with hemophilia who has established a new program to help young men with hemophilia get scholarships, finish school and find work. Geoffrey rightly recognizes the needs patients have as they mature to find employment. The meeting was to put heads together to find better ways to create results. I was very impressed with the level of respect and compassion each has for the other, and for each other’s organizations.

The meetings went on well into tonight, for we are ten hours ahead of Boston time.

Tomorrow I go off for a field visit about two hours outside of Nairobi, the capital, to meet with patients in their homes. Stay tuned!

The Kenyan Flag: The black stripe represents the African people; the red stands for the blood shed for independence. The green represents Kenya’s natural resources. The thin white stripes symbolize peace and unity. The central emblem is a shield of the indigenous Masai warriors.

Good Book I Just Read
Pooling Blood by Cheryl D’Ambrosio

This is the true story about two sisters with bleeding disorders (factor V deficiency), as told by their stepmother. It is absolutely compelling; a beautiful tribute to the story of Cheryl’s fight to keep the girls alive, and educate a medical community often ignorant of girls with bleeding disorders. From the opening scene of a blood smeared bathroom, to the blossoming of the girls socially at camp to a near-death experience while on a vacation, the book is a roller coaster of emotions and learning experiences. I started reading it while on the treadmill; three miles never flew by so fast! The book is a testament to advocacy and persistence, and Cheryl is a gifted storyteller.

The only places where the book falls short is when medical or industry related material is shared. The description on page 114 of Bayer’s Kogenate FS production stoppage is completely wrong; the explanation of volunteer versus paid blood donors is outdated and incomplete. The glossary however is very good. Readers should enjoy the story, learn from Cheryl’s experience and prepare to be very inspired.

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