December 2012

Ending 2012 With a Splash!

Let’s end the year not about hemophilia… sort of. While in Zambia, just three weeks ago, I rafted the mighty Zambezi River, a dream I have always had. Here’s my recollection of the day!

Another check on the bucket list!
Saturday, December 8, 2012
Writing from the David Livingstone Lodge, with the sun setting outside my door, facing the river once explored by David Livingstone in 1855, tired, spent and at peace. I spent the entire day rafting the Zambezi, and just couldn’t be happier! I am sun-burnt, a toe nail is ripped, my right thumb is not working, as I jammed it when I was ejected. But it was worth it. What
an adventure!
We started out at 8:20 am, when I was picked up. The accommodations here are fabulous–peaceful and the food is excellent. Choongo was to be our guide and he brought me to the hut where everyone congregated. Joining me would be a young guy named Mark from England, and a couple named Lisa and Collin, also from England. We got on the bus, and before we knew it were at the descent towards the
Zambezi Bridge connecting Zambia on one side to Zimbabwe on the other. I visited both countries this trip
Down into the jungle, then balancing on some very slippery and sharp basalt rocks, into the gorge formed by the river and ending in magnificent Victoria Falls. We were to raft 27 kilometers this day! Over 25 rapids. And a few that “didn’t count,” as Choongo said. Choongo is about my age, with a body hardened from ten years guiding the rafts. With us was Gordon, a soft-spoken, 25-year-old  Zambian with deep eyes.
When we reached the water, the view was spectacular! Above us towered the famous Zambezi bridge with the bungee-jump cords neatly tucked up. We watched one raft crash into the rocks on the left; crazy. One couple descended in separate, single-person kayaks; we learned later that after only one or two rapids, the girl left, crying. She had had enough.
I did read this on line before I went: White Water Rafting on the Zambezi River in Victoria Falls has been classified by the British Canoe Union as Grade 5 – “extremely difficult, long and violent rapids, steep gradients, big drops and pressure areas.” Oh yeah, bring it on!
Class V rapids action!
I’m ejected!
Gulliver’s Travels….

The first rapid “Morning Glory: was an eye opener. This was going to be awesome. Huge waves, roaring water, foaming and warm. We were blasted, soaked and wanted more! By the fourth rapid, “Gulliver’s Travels,” the waves were crushing and flipped the boat straight up and then to the right, where Lisa and I were seated. We both were ejected quickly. It was quite frightening. The water was churning and sucking me down. I felt as though someone had their hand on my head and wouldn’t let me up. I came up once, but was pulled right into another rapid, underwater. Somehow I grasped the whole time onto my paddle. I couldn’t breathe, and couldn’t seem to get to the surface. It must have only been seconds, but enough
time to try to strategize about how to get loose, and also, is this the end, really? I could see how people could drown in a circumstance like that. It felt like you were put into a washing machine without a way to get out. When I finally came up—and stayed up—I had a hard time breathing because I had ingested so much water. It had gone up my nose, into my sinuses. My airway was contracted and burning, leaving me gasping. Steve, the team member in the kayak, an athletic, older and solemn man, came to me as fast as possible and I held on tightly, bobbing in the churning waves. He brought me back to the raft. I gasped, “Steve, I’m going to name my first child after you Wait, my first grandchild! Even if it’s a girl!” He sort of smiled. Lisa was quite shaken and didn’t seem to enjoy the rest of her half-day trip after that. I recovered fast and thought, that was so awesome!

More rapids followed. But in between briefly, I was able to take in the stunning scenery. David Livingstone said of Victoria Falls, “Scenes so lovely like these must have been gazed upon by angels in their flight.” It is a primordial, enchanting place. Black as charcoal basalt rock is piled up like some giant infant’s building blocks.  I am mesmerized by the sight of them because I am so rock-crazy. Plucky trees grow straight out of the sheer
cliffs, their yellowish roots cascading down in tangles, like Rapunzel’s hair. It is a scene of wonder, and every chance I get I find my eyes drifting at the
rocks and cliffs in awe. Gordon pointed up to the sky and overhead, it seemed there was a brilliant halo around the sun. “Those are called… those are called…what do you call that?” he asked. “Sun dogs,” I replied, squinting at the phenomenon, though I had never seen them before, only in pictures. Sun dogs, chasing their tails around the sun, cavorting while we plunge ahead.

Young boys by the river
Half way through the day, we stopped for lunch, allowed Lisa and Collin to disembark, and picked up Victoria and Rodrigo, an adorable young Brazilian couple on their honeymoon. Gordon also left, and we acquired Leonard, a lanky youth with a flashing white grin, and a cheeky sense of humor! Young boys who had been bathing and playing on the rocks in a little natural basin stopped to come and ogle us. They lined up on the basalt ledges, their skin as charcoal-black as the rocks behind and beneath them. They seem to blend right in.
Off we went, back into the river. Mark and I were just seared by the sun, like two fish in a frying pan. No amount of sunscreen seemed to work, and we were doused so many times, it didn’t matter.
At Class IV rapid 13, “The Mother,” we hit a massive rebound wave and the entire  raft capsized. Again I was choking with water but this time it wasn’t so bad. I grabbed immediately onto the raft, but the big metal frame in back threatened to hit me. The current is incredibly strong and swift. First it pulls one way, then another, then sucks you from underneath.
The guides are amazing; within seconds Leonard hopped onto the upside-down raft, pulling Choongo on with him. I was already hanging on. But we were scattered everywhere. Little by little we gathered, then both guides used a red rope attached to one side of the raft, leaned back, and flipped the raft over and themselves back into the racing river. They scrambled in, nimble as river otters, and helped each of us climb back in. We gasped and sputtered but loved it all!
Swimming in the warm Zambezi
Victoria and Leonard clowning
Then at rapid 17, the “Washing Machine,” I believe, we crashed again, capsized and everyone went in again. The waves were massive and they kept coming. This time I drifted a bit and while everyone else got in. I drifted into an eddy; these are very tricky. As hard as you kick and swim, the current pulls you back into the eddy, which flows opposite the river! I had to really kick to get back to the raft, and was tired! Then later on, the rapids got more spread out, and were only class 2, still fun. We all jumped into the warm Zambezi several times, just to flow with the river. You can’t help but beam; it’s exhilarating!
When it was finally over, we pulled to the shore, walked a short way and hopped a rickety cable car to the top of the steep gorge. We drove quite a while to get back to the hotel. We had ice cold Cokes, and waved to the children in the rural villages we passed. These villages were so meticulously made, it looked almost like a Disney production for Epcot. The red soil was clean, the thatched roofs and mud walls, all coordinated the same.
Red as “lobstas”! Mark and Laurie
It just doesn’t get better than this. For me, the essence of life is personal development, direct and adventurous experiences, and contributing back to the world as much as possible to improve the quality of life for those with hemophilia. I felt I hit all that on this amazing trip to Africa! And I can’t wait to continue in 2013.

“Nothing But a Child…”

The words of this delicate and nuanced Christmas song bring to mind Brian, the malnourished 13-year-old boy with hemophilia I met two weeks ago in Zimbabwe. I’m not the only one with his haunting image in my brain; others have written who want to desperately adopt him, or do something to help him. He is wracked with pain all over, with so many joints simultaneously swollen. He only weighs 50 pounds. He has no parents and lives in poverty. He can’t walk, and when I saw him, couldn’t even hold a cup to take a drink. He is slowly passing away. We are sending factor for him, and gave him several hundred dollars–a fortune for a poor orphan who lives in rural Africa–but it’s not enough.

We’ve all suffered this past week through the loss of 20 beautiful children in Connecticut, in my own region of New England. Christmas is a time for children; let’s put our heads, hearts and resources together to see what we can do for Brian. I think we need to get him proper care in the US, strengthen him and nourish him, and then he can return home healthier and ready to survive his teen years. We can teach him to self-infuse and we can actually get factor to him.

Would you like to help? Email or call me. Let’s see what we can do to give Brian a better life in Zimbabwe. Last week I reviewed the book Into Africa, about Stanley’s daring journey to find the Scottish missionary, doctor and explorer David Livingstone. He was a deeply compassionate man driven with mission. On his tomb in Westminster Cathedral is written: All I can add in my solitude, is, may heaven’s rich blessing come down on every one, American, English, or Turk, who will help heal this open sore of the world.”

He also wrote “Sympathy is no substitute for action.” So many write so say the picture of Brian haunts them but what can we do? That’s the question. The answer is action. At this time of year, it’s our duty to reach out and help those who suffer. It’s Brian’s turn.

“Nothing But A Child”

Once upon a time, in a far off landWise men saw a sign and set out aross the sandSongs of praise to sing, they travelled day and nightPrecious gifts to bring, guided by the light
They chased a brand new star, ever towards the westAcross the mountains far, but when it came to restThey scarce believed their eyes, they’d come so many milesAnd this miracle they prized was nothing but a child
Nothing but a child could wash those tears awayOr guide a weary world into the light of dayAnd nothing but a child could help erase those milesSo once again we all can be children for awhile
Now all around the world, in every little townEveryday is heard a precious little soundAnd every mother kind and every father proudLooks down in awe to find another chance allowed
Nothing but a child could wash those tears awayOr guide a weary world into the light of dayAnd nothing but a child could help erase those milesSo once again we all can be children for awhile
“Nothing but a child”
Source: LyricFind
Songwriters: Steve Earle
Nothing but a Child lyrics © BMG Rights Management, Universal Music Publishing Group, Warner Chappell Music, Inc

Pioneers in Zambia

It’s hard to believe that just one week ago I was riding an elephant in Zambia!
Maurice Muchinda, new president of Haemophilia Foundation of Zambia
But let’s go back a few days; Thursday, December 5. I had flown in the night before from Zimbabwe, and met that evening Maurice Muchinda, an elegant man whose son David had hemophilia, and Charity Chipimo-Pikiti, chair of the Zambian Childhood Cancer Foundation, whose child has sickle cell anemia. Together Maurice and Charity are spearheading the new Haemophilia Foundation of Zambia (HFZ).
Not an easy task. In a country of 14 million, where there should be about 800-1,400 with hemophilia (take into account the average life span here is 52), there are only about 10 known patients with hemophilia. One patient was David, Maurice’s 19-year-old son, who sadly died September 2011 from a bleed. I had thought Maurice would naturally want to give up forming his foundation, but he surprised us all by bravely agreeing to continue. And so he has become the key player in an unexplored country.
Charity, Laurie, MoH Dr. Kasonde, Maurice
And it’s new and unexplored for all of us. I am the first person in the international hemophilia community to visit Zambia. Why me? First, the world is a big place. Even the WFH cannot be everywhere at all times. And it’s up to countries themselves to mobilize and ask for help. Often this is difficult. It usually takes one person, like Maurice, asking for help for his own son, to then be asked (in his case I asked him after we made a donation of NovoSeven) or to decide on their own to start a hemophilia nonprofit. And it’s a hard task: there’s no pay, long hours and a huge, multiyear, uphill climb. I love it but then, I get to go home eventually. All I can offer is some factor, strategic ideas, connections, commitment and eventually, success.

After this meeting, we head for the Ministry of Health. Like in Zimbabwe, we have to mount six flights of stairs. We are ushered in to meet Minister of Health Dr. Joseph Kasonde, a warm man. He listens to us share our thoughts about hemophilia, admitting “We have not paid attention to hemophilia. We’ll need to find out how many are diagnosed.” We have a thoughtful discussion, exchange cards and I present him with my book on VWD.

With Hon. Chomba and Hon. Kazunga

After we leave, we head to a shiny, big mall and have some tea. We laugh at
the slow service at Wimpy’s, despite the lack of customers, because the tall
young waiter is quite taken with the pretty young waitresses, and apparently not with us. After tea we head to the Ministry of Community Development, Mother & Child Health. These are the people in the forefront of grassroots education and outreach, something I am really intrigued with, because in Africa, we need to start empowering people at the home level. Most of them live just too far away from the hospitals. The Honorable Dorothy Kazunga welcomes us, and we’re later joined by Professor Elwyn
Chomba, Permanent Secretary. The ladies are warm, friendly, passionate. We speak about outreach, and how to identify more patients with hemophilia in Zambia. These ladies rightly know too that much of health care falls to the mother, and so empowering women is the key to success in Africa.

After this stop, we head to the Missionary Oblate, which has offered an office free of charge to the new Haemophilia Foundation of Zambia. It’s clean, functional and ready for business. We wait for lunch with two mothers and their children. They are shy, reserved, and ask no questions. One boy, Charles, very handsome, has the beginnings of joint damage already. The other boy, whose name sadly escapes me, is just a wild man! He can’t sit still, like most boys, and is climbing, curious and active. As we wait, a monkey scoots along the stone wall top, but Maurice notes it is lame. “It has hemophilia, too,” I comment, and everyone smiles.
Mom with active son with hemophilia

lunch is prepared, and some more volunteers arrive. These are trustees of the
new organization. Lunch is delicious—chicken, sausage, rice and vegetables—and we
speak a little. Still, the parents are extremely shy and reserved, so we don’t
get to share much. Afterwards, a photo session to capture our names and faces,
and then we depart. Everything is so new to the patients. I hope that in a few
years’ time, they will be the experienced parents coaching the new ones.

One happy face I meet is Fynn Machona, a handsome young man with hemophilia from Zimbabwe, who is now living with his sister in Lusaka. I met Fynn five years ago in Zimbabwe and am happy to say he looks great. He had hoped to come to Zambia to attend college, but this is not working out. He dreams of being a hematologist and working with hemophilia patients. For now, we’re glad to have him in Lusaka as he can help with the new hemophilia organization.

The new HFZ has what is takes. Maurice is dedicated and a professional. He’s
also retired, and has some time to devote to this new mission. Charity is also
professional, motivated by helping children, and knows how to put together a
nonprofit. The rest of the team are also professionals, and all are impacted personally
by blood disorders.
I leave the next morning after a breakfast wrap up on next steps, confident that this nascent group is going to progress quickly. I take a short one hour flight to Livingstone, Zambia, former capital, named after the famed Scottish explorer, doctor and missionary, David Livingstone. As I sit that night on the
banks of the Zambezi River, reading a book about Livingstone’s adventures, I think about how brave he was—how much he sacrificed (he buried his own wife Mary along the banks of the Zambezi after she contracted malaria), suffered and persevered, for years seeking to reach his final goal, to discover the source of the Nile.  I think it’s still brave to start a new journey—a hemophilia organization— in a country like Zambia, in the midst of suffering, budget shortages, with many dependent on you and looking for leadership and guidance. Even when the Royal Geographic Society covered backed Livingstone, it was still only him out in the middle of the unknown continent he so loved. Maurice and his team stand also in the middle of Africa, pioneering medical help and aid to families
with hemophilia; we can back them too, but we can also travel with them on their journey, so they will achieve their mission.

Great Book I Just Read
Into Africa by Martin Dugard

One of my favorite books.
This gripping tale recounts like a novel the story of the search for the source
of the Nile, considered in the mid-1800s to be the last great geological find.
The book picks up after Sir Richard Burton and John Hanning Speke return,
without definite proof. To put the question to rest, and to secure a financial
future for his motherless children, David Livingstone sets off one last time to
Africa in 1870 to search for it. Now in his 50s, Livingstone suffers mightily
on this journey, with infectious disease, tribal warfare, monsoons. The book is
full of suffering. Eventually, he cannot continue, and near death, awaits in a
village. Meanwhile, Henry Morton Stanley, a journalist working for the
tabloid The Herald, is secretly commissioned by the owner, bad
boy James Gordon Bennett, Jr., to find Livingstone, get the scoop of the
century, and bring him home, thus shaming even the British. The story is
riveting as the character study on what made each man tick, but especially
Stanley, an utter failure in life until this commission. He later became one of
Africa’s greatest explorers… and most reviled leader. Five/five stars.

“Human pieces of geometry”: Brian of Zimbabwe

With Dr. Timothy Stamps, personal health advisor to the president

I’m in Zambia, Zimbabwe’s huge neighbor to the north, having a hot tea on the deck of my lodge room on the
banks of the Zambezi. The sun is a scorcher today, the air humid as if someone
dropped a huge, wet blanket over the atmosphere. While I see Africa’s beauty
before me, I’m haunted by the image of an African boy in Zimbabwe. Though I
left Zimbabwe on Wednesday, my mind still drifts back, wondering what to do.

I visited Zimbabwe from December 1-5, and Zambia from the 5th-10th, tomorrow. I’ll write about
Zambia next Sunday and finish Zim here.
ZHA members with Mr. David Mvere, director of National Blood Transfusion Services

The Health Minister was unavailable to meet, but we did get to meet with the personal health advisor to the president, the charming Dr. Timothy Stamps, who I have met twice before. We chatted about
hemophilia, and it’s good to have someone like him in government who knows about it. But even more important, we have the National Blood Transfusion Service, which is really the backbone of hemophilia care in Zimbabwe. David Mvere, the director, is an advocate for those with hemophilia—and always ready to help us when we have product to donate. I’ve met him several times over the past 12
years. We will work together to see if we cannot move hemophilia care forward in 2013. What’s needed is a national “tender,” in which the government advertises that is has so many dollars to spend on hemophilia products. The drug companies then bid for the sale, keeping their proposed price tags secret from one another so the government can take advantage of the lowest price/highest quality drug. Zim hasn’t had a tender in almost 20 years, I think.

ZHA, Laurie and Dr. Dyana (center) at Parirenyatwa Hospital
The rest of my time in Zim is spent advising the Zimbabwe Haemophilia Association on
best practices and providing an assessment of what they need to function more effectively and produce
And then, there are the hospital, home and family visits. Last week I told you about Brian, an orphan who lives in a mud walled, maize-thatched circular room outside of Harare. We also stopped by the Parirenyatwa Hospital, the main public hospital in Harare, where some
patients go for treatment. Little Brian had been admitted. Simbarashe Maziveyi,
the ZHA president, chatted with him in Shona, the native language to learn more
about his case.  Simba would have made a great professional counselor; his calm demeanor, listening skills and reassurance touch everyone.

Simba, ZHA president, counseling Brian

We meet with Dr. Dyana, the Cuban
hematologist who chose to stay in Zimbabwe to help cancer and hemophilia
patients. Thankfully she did because Zim suffered for many long years without a
single hematologist in a country of approximately 500 patients.

Then we drove out into the bustling Harare traffic (that’s a good thing here! Shows progress) We visited Vincent, a 33-year-old with hemophilia, who
also happens to be a Save One Life beneficiary. He lives with his wife and small daughter in a 12×12 room—just a room—with all his worldly possessions: a small TV, some clothes, a few books. He has not worked since January, and you can see the anguish in his face. How do they eat? Where do they get money from? Save One Life gives him some cash. His sister lives nearby and helps out. But they are desperately poor. Vincent does own a bicycle, which he proudly shows me. He can bike to the treatment center when he has a bleed.
This must sound absurd to the average American with hemophilia! But it is a survival tactic in Zimbabwe. And when Vincent gets to the treatment center at the Parirenyatwa Hospital, there usually is no factor, of course.

Simba interviewing Nhamo
We drive to see Nhamo, a 41-year-old man who has come from very far away by bus. He’s had an ulceration and bleed on his left hip for months. The tissue has died and needed to be cut away. The wound can’t seem to heal and there’s no more factor. He’s now staying with his sister in a small room on someone else’s property. His crutch is homemade–a stick. He can’t work, can’t heal… this story is repeated many times in Africa. Luckily, we do have factor for him. Then he shows us his hospital bill: $2,500+ dollars.

Talk about out of pocket costs: how is
a destitute guy from a rural area ever going to pay this off? Might the hospital
refuse him treatment if he doesn’t pay? Maybe. Simba pledges to go talk to
officials on his behalf. This is really the value of going to visit patients.
The founders of the Flying Doctors of Africa (now AMFAR) once said that if you
want for patients in Africa to come to you, they’ll die; you need to go visit
them. I take that to heart.

Last stop of the day is Tanaka, from a family I have known for 11 years! Tanaka is adorable, charming, bright. And a hugger. Hugs are not a real tradition here, but Tanaka sure loves it. The whole family and I embrace one another at our reunion. They present me with a beautiful blanket with an elephant on it. Tammy from Texas sponsor Tanaka, and the money really helps him. Tanaka flashes me his trademark megawatt smile when it’s time to leave.

Tanaka gives his sponsor a gift!

On Tuesday we have a patient meeting,
with as many families as possible in attendance. Some have come from hours away
by bus. Many are in pain, seeking relief. Some of the moms are single, and
confide their fear about how to get financial relief, and how to treat bleeds.
Someone asks about a cure; another about gum bleeds.

One enormous obstacle in any developing country is infrastructure, particularly transportation. Even if factor were available, many cannot get to it as they can’t come to Harare each time their child has a bleed. I’m convinced the only solution long term is home therapy, which doesn’t exist in most developing countries. As many of the moms nod their
heads, we ask for a volunteer among them to organize a home-infusion training day. It’s a go, and the moms pledge to get together; the wife of one man with hemophilia is a nurse and she offers to be trainer. It’s a positive thing to at least start with.

On Wednesday, as I prepare to leave for the airport, Simba begs just one more visit. Often it’s when I am feeling tired, burned out just want to get on with the next leg of the journey or even go home, that the most important child is met. This happened Wednesday.

Vincent and family: out of work but not out of hope
We drive back to the Parenireyatwa Hospital, to the front of the shed where the ZHA offices are. There sits a little boy that immediately brought to mind the words of Frank Schnabel,
founder of the World Federation of Hemophilia: that patients with hemophilia were “human pieces of geometry” stuck in a wheelchair. Only this little triangle boy didn’t even have a wheelchair.
Brian is 13, but only weighs 25 kilos, about 50 pounds. Malnourished, in horrible chronic pain, he sat in the brilliant sunlight with swollen feet, four grotesquely swollen fingers, withered biceps—I could touch my forefinger and thumb around them easily—huge elbow joints (or was that an optical illusion due to the wasted musculature?). His face registered such pain; and he was wearing a Jim Morrison t-shirt, as if he knew I was a huge Doors fan and was desperate to get my attention.

My heart broke for this child, an orphan, being raised by his grandmother in a rural village, where he will no doubt be blamed for this disorder because of witchcraft. When I asked Brian to lift his arm, to see if he could at all extend it, he had to lift it at the shoulder, but lacked the muscles to lift his arm, and was prevented from
searing pain.

Brian steals our heart: he’s an orphan,  can’t walk, or lift his arms and is in constant pain
I have never seen a child tortured before, but this was as close as I could imagine to seeing it. Simba, voice calm and soothing, elicited the necessary information, and we arranged for Brian to be admitted at once, and provided the factor. In the States, Brian would face months and months of treatment, nutrition and rehab. A Facebook posting that night led to three families wanting to adopt him, and more who want to sponsor him.  We even asked Simba that night, but no. “His family could not possibly part with him,” he texted.

It’s comforting to know that Brian is loved, but it eats at us that our children in developed countries enjoy every benefit of medicine and can lead normal lives. Brian is stuck in a time-warp: care will come to Zimbabwe, of that I am sure, but not perhaps in time for this
one precious child.

Laurie, Simba speaking with Brian’s sister, “Beauty”
A great goodbye from the Youth Committee of the ZHA

Zimbabwe Rising

It’s always startling when you visit a developing country that is actually, well, developing. That’s Zimbabwe. When I visited five years ago, the country was teetering on the edge of economic collapse. Harare, the capital, seemed desolate. I half expected to see tumbleweeds blowing about, like some abandoned mining town in the Wild West. There was little fuel, little food, miles-long queues at the lone gas station that actually had gas, and long lines of people waiting at the bank doors, begging to withdraw their life savings before the currency collapsed. To pay for anything literally required bags of Zimbabwe dollars, which were fairly worthless. Each restaurant, if it had food, required a money-counting machine to “quickly” add up the plummeting currency.

The ZHA Committee Welcome
When I arrived in Harare on Saturday, I was stunned at the transformation. I was greeted by my colleagues from the Zimbabwe Hemophilia Association, three men who have hemophilia. Downtown was bustling with cars, nice cars. I had never, in the three previous visits to Zimbabwe over twelve years, seen so many people out and about. Doors were open for business and shops and restaurants were selling. Most surprising was seeing the predominant US dollar being spit out of cash registers and hands like slot machines. Zimbabwe had embraced the US dollar as a major currency, and suddenly, things got better.
But not everything: life for those with hemophilia is still harsh and unforgiving. I was about to be reminded just how much.
Reality Shows

Today, Sunday December 2, we had a meeting of the Zimbabwe Haemophilia Association (ZHA) at my hotel, the Rainbow Towers in downtown Harare. The committee members quietly presented a still grim picture of life with hemophilia: Zimbabwe is totally dependent on factor donations, and in the past year ten patients died from lack of clotting factor. Unemployment still hovers are 80% and most of the men with hemophilia cannot get jobs. With a show of hands, five of the eight at the meeting were not presently employed. There is only one hematologist in the entire country, in Harare. One. And she’s Cuban. Seriously, God bless the Cubans for sending their doctors out in the world as part of their public health policy.

No one from Harare has been to Bulawayo, the second largest city, since 2007, when I last visited there and brought two committee members with me. Reason? Lack of funding. In fact, lack of funding impacts everything. So the ZHA has plans and dreams but can scarcely carry them out. The lack of funding is demoralizing and hangs over everyone like the sword of Damocles. But the ZHA is tenacious; the members just won’t quit. As one confided, they may wish to walk away, but they would leave behind the deaths of dozens of people on their souls, for without the ZHA, no one would care about the children with hemophilia in Zimbabwe. And these children are slowly being tortured, by an ancient disease that is relentless, senseless and crippling.
Solitary Confinement: George’s Story
Each visit to a developing country is not complete until I witness: this means I go out into the “field,” whether it is literally a field, farm, megaslum, or inner city barrio; anywhere there are patients living, struggling to survive. I need to immerse myself in their world, if only for a day or even a few hours, to know how they live. How can we help if we don’t understand how they live?
Simbarashe Maziveyi accompanied me. Simba is a young man with hemophilia who is articulate, thoughtful, and as soft spoken as he is determined to change hemophilia’s destiny in Zimbabwe. He is president of the ZHA and has severe factor VIII deficiency. I met him first in 2000, during my first trip to Zimbabwe, when he was only 19, a fresh-faced college student. We’ve been in touch ever since as he was groomed to one day assumes leadership. Simba recommended that we go to see George.

Just 20 minutes outside the electrifying energy in Harare, a subtler tragedy emerges. We drive past roadside shops and trading centers, colorful and crude. Here, vendors hawk the items they purchased in South Africa to sell to pedestrians; and so many in Zimbabwe seem to walk everywhere. On the outskirts of the capital, the highway eventually stretches before us as we pass “Goat’s Place,” a sad, miles long cemetery, simple and rural, dotted with grey headstones, so nicknamed because next to it is the market where goats are sold. Roads taper down to dirt roads on our quest to find George, a 20-year-old with hemophilia. The sky, so unnoticed in the sensory overload of Harare, becomes startling large and piercing blue with puffy clouds, like an anesthetic beckoning to look up and not down at the suffering.

Zimbabwe means House of Stones

We stop briefly and in hops a smartly-dressed lady and her daughter: this is Judith, George’s sister, who will show us the way. George doesn’t have an actual address. As we turn down another dirt road, Simba points out the distant city ahead, Chitungwaiza. As I struggle with the Shona language pronunciations, he tells me “Chi Town” will do nicely. It reminds me of the scene from “The Mummy” when the adventurers first spy the far off city of Hamunaptra, where their fate awaits. Like military ramparts, large hills of dazzling rocks both distract from and guard the city. I have a sudden urge to put on my rock climbing gear.

Drought stricken Maize

A sharp left and we rattle down an uneven dusty road, our driver Andrew taking care not to damage his car. We park and hop out. It’s hot. The dirt crunches beneath our feet and I realize we’re stepping on dehydrated maize. Despite being the rainy season, the ground is thick and hard, cracked and muted. The maize is either ankle high when it should be thigh-high, or it’s nothing, dead before it could even sprout. I feel like I am on the edge of the Sahara; how did the topography change so drastically so quickly?

We walk a bit to two thatched, circular dwellings; this is where George lives. He hobbles out of the mud home, on one crutch, left leg permanently bent at an almost 45 degree angle. Simba tells me the one crutch was an improvement; when they first met, George was using a hoe as a crutch.
Laurie interviews George

George is smiling, displaying a gorgeous, perfect set of teeth, like most Zimbabweans. But he gets shy, and almost embarrassed. Perhaps because of our age differences, or that I am an American come to visit him. Simba’s comfortable style puts him at ease. We interview George to learn more.

George in front of his house

He lives in these two tiny, mud dwellings with his 17-year-old brother Simba. One is for cooking only. The other, which cannot be more than eight feet in diameter, is for sleeping. His parents are dead. He has four other brothers and two sisters. His sister Judith, the one who came with us, oversees his care. But she lives four kilometers from him. How does he get by? He farms a little, seemingly impossible given the state of his leg. He simply cannot walk without a crutch and barely can walk with one. A nearby well supplies water; there is no electricity. (Try to imagine life with hemophilia, without any electricity. Just try)

George is solemn as he shares. This is a young man who has suffered. Loss, pain, deprivation and uncertainty about a future.

George and the bombed out bridge

What does he do when he has a bleed? He must hobble to his sister’s place, four kilometers away. As if that wasn’t bad enough, he must cross a footbridge. The bridge is in ghastly disrepair. Originally the land was owned by a white farmer, as much of the land in “Rhodesia” used to be. Independence came for black Zimbabwe in 1980, when Mugabe came to power. In 2001, during the very week I was there, Mugabe decided that there would be land “reform.” Black citizens could now reclaim their lands from white farmers, even those who had legally held family farms for 100 years and had provided the agricultural revenue that earned Zimbabwe “the breadbasket of Africa.” The guy who owned this land I stood on was one of them, and he was not happy. Before he abandoned his land to the black citizens who came to claim it, he left a little present behind. He bombed the stone footbridge. George now has to navigate this treacherous passing each time he has a bleed.

He then spends the night at his sister’s, and in the morning goes to Harare, to wait at the hospital for help. By then a lot of damage has been done to the bleeding joint.
George and mentor Simba

The family hopes to get George started in some business, maybe selling chickens. Poultry sells well in Zim, and it wouldn’t require the manual labor that farming does.

Before we leave, the rest of George’s brothers show up. One has perhaps had a bit too much of “Zed,” the potent, illegal brew that is bootlegged from Mozambique to the disenfranchised in Zim. It’s a killer, literally, and is nicknamed “Zimbabwe Early Death.” Later, when Simba and I stop at a grocery store to pick up staples as a gift for the next family we visit, two men loaded on Zed start harassing the women in the cashier line. In their hands is a bottle of whiskey—as if. I have to push them back, out of my private space as they are breathing down my back literally and making comments. Usually Zimbabweans are the most civil and polite of people I have ever met, but Zed makes these two guys dangerously uninhibited.
Time to go and visit another family, and George’s visit puts a sad touch to the day. But a decision is made: we need to get him enrolled into Save One Life, our nonprofit that sponsors children with hemophilia in developing countries. If ever there was a candidate for Save One Life, it’s George.

George awaits a Sponsor

Yet there’s a touching ending to the day: I hand George $100, a fortune, and a gift from Cindy of Hawaii. Cindy volunteered her honorarium in one of our market research studies, to give “to someone in need.” It’s nice to know a young mom of a child with hemophilia in Hawaii can impact a young man who is almost in solitary confinement half way around the world, in a rural village in Zimbabwe.

As we pull away in the car, Andrew, the driver begins peppering Simba with intelligent questions about hemophilia, from the symptoms to the genetics. And finally, “How did you make it so far, without much medicine?”
Simba smiles, as he is not one to complain. “Faith,” he says. “Mostly faith.” A family of chickens cross the road in front of us. The hen has eight little chicks in tow, but the last one, for whom we have to stop, is lame in one leg, and cannot walk well. As it struggles over the drought-stricken ruts in the field, I say, “Like George.” We smile sadly and drive on.
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