Jose Memorial Haemophilia Society

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!

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, Zoraida. 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 Haemophilia 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.

Stairway to Heaven

The true result of endeavor, whether on a mountain or in any other context, may be found rather in its lasting effects than in the few moments during which a summit is trampled by mountain boots. The real measure is the success or failure of the climber to triumph, not over a lifeless mountain, but over himself: the true value of the enterprise lies in the example to others of human motive and human conduct.” —Sir John Hunt, leader of the 1953 British expedition that first ascended Mount Everest

In one week I will return to Kenya, for my fifth visit. And two weeks from today I will be somewhere along the Machame route on Mt. Kilimanjaro! I’ve been training hard these past two months with an excellent trainer. He’s helped me increase my endurance–rather than walk on my treadmill, or even jog, I set it at the highest incline, strap on ten pounds and my hiking boots, and “hike” for an hour, sweat pouring off me. The first 15 minutes are hard, but soon, it is a rhythm, and then it’s easy. I look forward to it the next day!

Check out my rainproof jacket, embossed with our Kilimanjaro logo, compliments of Neil Herson, president of ASD Healthcare and fellow teammate!

Twice a week I’ve been doing plyometrics, simple looking exercises that are deceptively hard. Dan’s license plate reads “TRNZ4MR” and he is a Transformer! I’ve shed 7 pounds of fat and have toner muscles. Just in two months! I have learned to love to eat egg white and protein bars, and no longer crave M&Ms, my stress food. I feel ready for Kili.

Mary, my 17-year-old daughter, feels ready too. She has been hiking with me, and most recently, in Montana for one week. While hiking up the ski trails, now all grass and rocks without snow, look at the sign she came upon! A good omen. Another? She worked out with Dan once–and when she hit my iPod, which had been playing the Doors for an hour–the shuffle picked a song out of 4,200 songs… called “Kilimanjaro.” (Hear Twilight Zone music playing, anyone?)

Today we sorted through all our gear. It’s a lot of planning. We have to plan for 5 days in Nairobi, visiting hemophilia patients, the members of the Jose Memorial Haemophilia Society, the hospital and doctors. We’ll be taking visits to the villages, far from Nairobi. Then, we will leave on the 5th to fly to Arusha, Tanzania. The next day, we start our 6 day climb!

All of this benefits Save One Life and our Africa programs. All ten climbers are paying their own expenses. Every penny raised goes to the organization and to fund our programs in Africa. Please stay tuned as I hope to bring you stories of our adventures, and portraits of the people whose lives we touch. I am most anxious to see Peter, who has hemophilia, and his younger brother Zakayo, who was in a psychiatric ward when I visited him, a victim of the riots that broke almost two years ago. The ward was a grim place. His brother was declared “cured” but the family had no money to pay for his care. No money? No release. The poor young man was trapped in that place. We paid the $300+ fee to get this young man released to go home to his family. For us this is what it means to save one life. One child, one young man, one hemophilia patient at a time. They all have names and stories and our climbers will have the immense privilege to enter their world, and experience a little of what they endure.

Our climb up Kilimanjaro may be the hardest thing we have ever done in our lives, but pales next to the daily lives of those who live in poverty with hemophilia. Thinking of them makes our climb a stairway to heaven, as the money we raise will help ease their suffering. We get to relax after our six day ordeal; theirs never seems to end.

Please make a contribution to the fundraiser! 100% of your donation goes to Save One Life and our Africa program, and not to climbers’ expenses! Help change the lives of those in Africa with hemophilia–one at a time. Visit SaveOneLife.net and click “Donate”

Into the Heart of Africa: Visits to Villages


(Photo: Road to 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 Haemophilia 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.

(Photos: Dr. Ngyo gets first donation of factor; Waiting room)

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)

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 Haemophilia 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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