Zimbabwe Haemophilia Association


Thanksgiving Day last Thursday was celebrated all across America but it was a sad day in Zimbabwe. We lost another young man to hemophilia, Khumbs.


Khumbs was very special to me. I first heard of him in 1998, when he was only eight years old. He was about to lose his leg after an ankle bleed became infected. It was a risky procedure because there was (and still is) no factor available in Zimbabwe. We tried to ship product as quickly as possible, to try to save his leg, but it was too late. In 2000 I traveled to Zimbabwe, and met little Khumbs at his home in Bulawayo, Zimbabwe’s second largest city, which always reminds me of New Orleans. He was charming, with a big smile. His mother had died recently. Loss, then more loss. Zimbabweans are used to losses.

In 2001 we held the first-ever hemophilia camp in Zimbabwe, named after one of the founders of the Zimbabwe Haemophilia Association, Norman Mubaiwa. 65 children who all come from impoverished homes attended. It was held at the Hwange Safari Park, and for the first time in their lives, the Zimbabwe kids got to see their native animals. Zebras, giraffes and wildebeests all came to the watering hole at dusk. Khumbs followed me around everywhere at that camp, smiling his infectious smile. On spindly crutches and one leg, he scuttled about, always tailing me. He didn’t speak English, only his native Ndebele. When I would turn and look at him, he’d get shy and smile. Later on, I saw him sitting by the small in-ground pool. I motioned for him to go in but he was too shy. Zimbabweans are so polite and sensitive. When I insisted, he finally believed me and next thing I knew, he shucked off his pants and jumped into the pool in his underwear, not at all conscious of his stump. He had a blast!

I took a photo of Khumbs at that camp, and his smile summed up the joy I have seen in children worldwide when they go to camp. He was beaming. I took that photo and had it digitally enlarged and processed like an oil painting. I hung it on my wall so that Khumbs’ smile was with me every day.

I returned to Zimbabwe in December 2007. Conditions in the country had deteriotated unbeliveably. 80% unemployment, one million percent inflation, food shortages. I returned to Bulawayo, not an easy task given the lack of gasoline; it’s a five hour ride from the capital. We visited Khumbs again. He was so tall! And so healthy looking! His wonderful uncle took Khumbs and his brother in, after their father died. More loss. Khumbs was perched on the same pediatric crutch that he had been using, which was now patched. After our happy visit, I went off to look for a new crutch.

We found Khumbs a sponsor and he became our first enrollee in Save One Life. This program provides financial resources each month for children with hemophilia in the developing world. His sponsor was Jill Smith, a hemophilia nurse from Australia, who had traveled with me to Zim in 1999. She had met Khumbs, too.

How shocking to awaken on Thanksgiving morning to a text message from Zim saying: “Khumbs is gone. We are devastated.” More loss, always more loss.

Khumbs’ picture will forever stay on my office wall, a snap shot of a time when we gave a brave little boy who had lost almost everything the most wonderful time of his life–hemophilia camp. And now, we are the ones left with the loss.

(If you’d like to sponsor a child like Khumbs, please visit http://www.saveonelife.net/ Despite his loss, we are saving lives!)

Love: From A (America) to Z (Zimbabwe)

If you read about my travels to Zimbabwe in December 2007, you’ll remember I went to the home of Elton Sare, a 17-year-old with hemophilia who was suffering from a grotesquely swollen right knee. I met Elton’s entire family, including brother Emmanuel, age 11, who also has hemophilia. Elton lives in poverty: his father died ten years ago. His mother earns only about $27 US a month selling vegetables. His older brother Sylvester was sick with tuberculosis, quarantined in the kitchen, sleeping on the cold, hard floor.

John updates Elton’s shots

Elton haunted me for months, and I tried to find help for him–a hospital that might offer free care. I had just about given up, until I met UN Goodwill Ambassador Juliet Hanlon, who persuaded me to keep trying, day after day. Juliet gave me renewed faith and hope. I started asking again.

When I mentioned Elton’s case to Dr. Len Valentino (chief of Pediatric Hematology and Director of the Rush Hemophilia & Thrombophilia Center at RUSH Hospital University Medical Center in Chicago) at the NHF annual meeting in November, he told me he might be able to help. Just get Elton here and we would appeal to the generosity of the RUSH community to help.

What’s happened since then is nothing short of a miracle. Elton is here now, in Chicago. He just arrived Saturday morning, after 30 hours in transit, traveling alone, with three plane changes. The gracious staff at South Africa Airways ensured he arrived safely. What courage Elton has!

You cannot imagine the challenges to get him here. When Dr. Valentino offered the surgery, Providence, as they say, started moving. We found a donor for plane tickets–Neil Herson, president of ASD Healthcare. Wyeth agreed to provide BeneFIX for the surgery. My dear friends Chris and Angela Castaldo, who have a young son with hemophilia (and two others!) opened their home to Elton for a month. A volunteer from Zimbabwe living in Chicago, Emma, helped meet him at the airport, to make him feel more at home. Even the UN got involved when it looked like Elton’s visa might be denied. A collection was taken through Save One Life to raise money for the passport, visa and traveling expenses–$2,900 raised in two days!

Elton comes from a country that is collapsing: there is 80% unemployment, over one million percent inflation, the world’s highest. And a raging cholera epidemic that has killed over 3,700. Food and gas are in short supply. Elton went shopping today at a mall: his eyes wide, he was overwhelmed seeing all the stores, the sites, the sounds. But not so overwhelmed that he didn’t know what to say when asked if he wanted a CD: “Usher.”

I learned through Chris that Elton’s brother Sylvester died of TB last summer. And his older sister died just in September of meningitis. Loss is common in countries like Zimbabwe. I wonder how his mother ever found the courage to let her 18-year-old son board a plane and fly half way around the world to be with strangers in a strange country.

But Elton is adjusting as only a teen can. He loves the cold weather, enjoys movies on the TV, and is warming to his host family. It must be so strange. He had his first infusion tonight for a bleed in his right elbow. Tomorrow (Monday) he has an array of tests at RUSH, and on Thursday, he gets his operation for his synovitis. We’ll keep you posted on how he is doing. You can also read Chris’s website: http://www.chris-tocentric.com for a first-hand report.

Thanks to everyone who is helping Elton! Please consider making a contribution, so that we can buy Elton new clothes, a suitcase, some CDs, and art supplies (he loves to paint in watercolor!). We want to stock him up before he heads back March 28 to Zimbabwe, where these things are not available, and where life is the greatest gift.

Go to www.SaveOneLife.net and click “Donate.” It’s that easy, and will mean so much to Elton.

“Safari” through Zimbabwe

My trip to Zimbabwe has come to a close. I am preparing to leave today, with mixed feelings. There is so much hardship here, but so much potential!

Friday was spent mostly in transit. Peter and I traveled together with his family: Laureen, his lovely wife, who shares the same name as me; Prince, his 11-year-old son; and Nkosi, his active and mischievous 3-year-old son. The trip was over 4 hours north to Victoria Falls. We traveled mostly in the evening, which is risky as there are animals in this very rural and wild land. We arrived safely and settled in.

Saturday we had quite the day! We began with a helicopter ride over Victoria Falls, the longest waterfall in the world, which creates a natural border between Zambia and Zimbabwe. Laureen and the boys had never flown before, and this was amazing! The boys were just fascinated and so excited!

Then we had a hike through Victoria Falls itself to see this stunning natural wonder of the world. Shadowing us were a troop of monkeys who were quite bold. We also saw deer along the path. The views were many and just indescribable. Vic Falls was discovered in the mid-1800s by British explorer David Livingston.The tremendous water power from the Falls kicks up spray and creates a rain forest all along the length of the Falls.It was hot that day so the “rain” felt great.

Finally we had a night safari through the Vic Falls game reserve. Safari means “journey” in Swahili, and was introduced into the English language by Richard Burton, the famed Irish explorer who charted interior Africa in the mid-1880s. On this journey, we saw elephant, rhino, hippo, impala, zebra, wart hog, water buffalo and tons of bugs. Our guide Mike was fantastic and taught us a lot about each animal, more than you would ever learn on a TV show, and the delicate eco-system that keeps all things alive in their symbiotic relationship. We didn’t feel so symbiotic, however, particularly when we stumbled upon a 100+ herd of water buffalo, who stared at us menacingly. Water buffalo are considered the most dangerous animal in Africa. And they stood only a few feet away!

As wonderful as the day was, Peter and I couldn’t help but continue to brainstorm ways to help the Zimbabwe Haemophilia Association get organized, raise awareness of hemophilia in the country, secure funds and most immediately, help the children in dire need. Top of our list? Elton, the 17-year-old with the hideously swollen knee. He needs to go to South Africa at once for testing to try to save his leg. We have a massive to-do list when we each return home.

I must end my trip now. But let me thank Peter Dhalamini for his superb assistance all throughout my trip. Peter organized every aspect of it and is well respected and beloved by the hemophilia community here. He has hemophilia, has laboratory training, and is a born politician! He knows everyone and can enlist just about anyone’s help. I cannot thank him enough for making this trip so safe, effective and enjoyable. Thanks also to his family for sharing the last leg of our trip together.

Thanks also to so many others: Lenox, Dr. Mvere, the ZHA, Collin Zhuwao, Simba… and everyone who assisted. Zimbabwe is a tough place to live. Food, cash, fuel, foreign exchange, medicine and basic necessities are all hard to come by. But its people persevere with grace and dignity. Gentle and patient as they are, Zimbabweans don’t have the luxury of waiting out the ravages of hemophilia, and that is something we are about to change. Help is coming.

(Photos: Victoria Falls; Impala; One of Big Five; How the other half lives)

From the Rich and Powerful to the Poor and Dignified

The weather is cool and breezy in Bulawayo, the second largest city in Zimbabwe. It’s a city with wide streets, wrought-iron architecture that might remind you of New Orleans, flowering trees and fresh, breezy air. It is also a city with characteristic long queues for the bank and the gas stations, with people foraging for bread and foreign exchange. Zimbabwe is a tough place in which to get by.

We started our trip just yesterday but it seems much longer than that. While waiting in the lobby of the former-Sheraton-now-Rainbow Towers hotel for our ride to Bulawayo, hotel staff began literally rolling out the red carpets. As we quickly assessed, the president of the country was soon to arrive. That would be Robert Mugabe, reviled by western countries as an arrogant and deluded dictator, and here, sardonically referred to as “Bob.” How to describe him? Think Enron. There has been no natural disaster in Zimbabwe, no civil or cross-border wars, no Communist rebels; so why the severe economic downturn? Why is it people cannot even find bread to buy? Why is it that people cannot even access their own money out of their own bank accounts? Why have Dunlop Tires and Hertz, among many other corporations, pulled out of this country? Disastrous government policies that penalize its people, who are hard working, long suffering and much too diplomatic and kind. So in strode Mugabe and his retinue, along with the president of Senegal. I snapped a photo of “Bob,” now immortalized in my scrapbook, and someday immortalized in the history books alongside others of his kind.

Just to give you an idea of how difficult it is to manage in Zim, look at what we had to do to get transport to Bulawayo. Though we had reservations with Air Zimbabwe, their computers had been down for two days. Unable to call to get through, Peter Dhlamini, my host, friend and one of the founders of the ZHA, visited their offices several times, but the lines were long with other travelers, all trying to get tickets. Eventually, we lost our reservations and tried to hire a car. Well, without Hertz, we only had Avis, which had no cars. Peter finally located a friend, “Luckey,” who had a car, and Peter, Collen Zhuwao, the general secretary of ZHA, Luckey and I started on our long journey, in pelting rain, through the Zimbabwe countryside.

But today more than made up for any inconveniences. We started our day by visiting Andrew, owner of a tool shop, and his 18-month old son Michael, who has hemophilia. Imagine having a baby with hemophilia and not having any access to a hematologist or factor! So far so good for them, but as Michael grows, bleeds may increase in frequency. We discussed dosing, factor brands, symptoms and what to expect as Michael grows older. I gave Andrew a copy of Raising a Child With Hemophilia and urged him to read it as Michael develops. Michael had not yet been registered by the ZHA, so we recorded all the information they would need to add him to the registry.

We next visited the Bulawayo branch of the ZHA, located at Mpilo Hospital, and met Ndemba, a young man with hemophilia who mans the office. The clean and tidy office is in need of a computer, printer and refrigerator for factor donations. We also met the CEO of the hospital, and Phineas, the Matron, an energetic man and registered nurse who handles all the hemophilia cases. The reason for this is that–try to comprehend this–there is no hematologist in Bulawayo. None to service the 18 registered patients. Things are so bad in Zimbabwe that there is a “brain drain,” with all the professionals and skilled people fleeing the country. Yet the hospital itself is clean and operational, settled in a quiet area, surrounded by beautiful trees and tropical plants.

Last visit of the day was to the home of one child who made a permanent impact on my life: Khumbs. I first met Khumbs on my 2000 visit. A motherless child, he had just had his leg amputated the year before when a knee bleed had not resolved (pooled blood eventually can lead to gangrene). He was only nine years old. I saw him again in 2001 at our first camp in Zimbabwe. Shy, sweet, he followed me around the camp, propelled by his crutches, wanting to communicate though he could not speak English. Smiling was our language. Next year, his father died. Left an orphan, he was faced with living with his grandmother, who lived in a rural village. Living in rural Zimbabwe and having hemophilia could be a death sentence. But his uncle stepped in and adopted both him and his brother, who also has hemophilia. Now both boys are living with their uncle, who also has three other children, and both attend school and look strong and healthy.

As we pulled up to their house, I waved enthusiastically to Khumbs and he waved back. I was so happy to see him again! His framed picture hangs on my office wall and I had never once forgotten him in all the years. He and his brother had grown so tall that I was dwarfed; their uncle has cared for them remarkably well. We had brought with us reporters from the local TV and newspaper and we filmed the reunion, and interviewed with them. Our story will appear on the news in the coming weeks.

I pledged to put both Khumbs and his brother in our program Save One Life, so they can begin receiving sponsorship money. Their uncle only earns the equivalent of $20 US a month as a librarian. He must pay money for transportation to his job, which consumes most of his income. I don’t know how they manage; I really don’t. Save One Life will effectively double his salary, and give the family the money they need to get the boys to Mpilo for treatment when needed. We enjoyed sitting in their yard, playing with Khumbs’ toddler nieces and gaining renewed respect for the very desperate lives of the poor. Somehow, in the midst of chronic pain, poverty, economic collapse, a pompous government and repeated loss, this hemophilia family has managed to keep its dignity and hope.

(Photos: Andrew, baby Michael and Laurie; Bulawayo’s stunning architecture; Getting by selling vegetables; Khumbs and his brother)

Zimbabwe: The Patients’ Plight

Zimbabwe is seven hours ahead of Boston, my home, but decades behind in development. Today was a sampling of a day in the life of an average Zimbabwean: long lines at the bank; money inaccessible at the bank; fears of not procuring gas for the car; telephone lines down; blackouts; and no restaurants at which to eat! Worst of all for those with hemophilia, no factor VIII, except for the stash I brought with me to donate. I am amazed at the struggles Zimbabweans must endure daily, and how graciously they accept their difficulties, how they laugh over it, even when they are most worried.

I am privileged to work with an incredible group of people: the Executive Committee of the Zimbabwe Haemophilia Association. Today was our day to brainstorm next steps in the organization. The ZHA has had rough times in recent years, not only from the economic climate but also from internal difficulties. Those times are behind them now, and the new committee is dedicated, hard working and forward looking. Members include: Simbarashe Maziveyi; Collin Zhuwao; Frankie Mutandwa; Doreen Machona; Caryn Thomas; and Peter Dhlamini. Doreen and Caryn are mother of sons with hemophilia, and the others are all young men with hemophilia. All work as volunteers.

First we met with Dr. David Mvere, CEO, and Emmanuel Masvikeni, Blood Procurement Manager, of the National Blood Service, which handles all blood donations and diagnostics for Zimbabwe. The NBS supports the ZHA as much as possible, and today’s meeting affirmed ways they can work together. Many great ideas were generated. Critical, according to Mvere, is the need to get assay kits to be able to diagnose factor deficiencies. The NBS currently cannot diagnose anyone in the country; and sitting just in the next building, at ZHA headquarters, was a young mother with a one year old covered in bruises. The woman’s brother is a diagnosed person with factor VIII; the baby is suspect but there is no way to be sure. Plans were made to try to secure kits for the NBS.

Later in the afternoon, we met at the NBS conference room to discuss ZHA needs, and set goals and prioritize them. We also discussed the option to have a board of directors, changing the constitution if needed, and ways to attract patients to the monthly meetings. The outcome was exciting, and my company has pledged to donate funds to purchase a new refrigerator for storing factor (the current one does not work) and to purchase stationery and business cards so the ZHA can start fund raising and networking. Many more plans were made for later in the year, but small steps first are best.

We then set out for a long ride to the outskirt of Harare to visit patients. This is always the best part of my overseas trips: to enter patients’ homes, meet the family, take in their surroundings, learn first hand what their lives are like. How can I possibly understand their needs with a compassionate heart if I don’t visit their homes? And no matter the country, families are always so honored and happy to have guests. In Zimbabwe, the traditional greeting is to clap hands, and the guest claps back, all the while saying “Makadee,” Shona for “How are you?” It was delightful! In the first home, we met Elton, age 17, and his brother Emmanuel, age 14. I changed my mind from what I previously wrote: Elton has the worst case of synovitis I have ever seen. The photo speaks for itself. He has been like this for one year. A talented student, he has had to drop out of school because he cannot walk. He is in constant pain, but like all Zimbabweans, bears it regally. I was so shocked by his condition, I discussed with Simba what we could do to help him. He needs immediate medical care. But what? To bring him to a hospital, Simba explained, would accomplish nothing. Medical staff cannot to synovectomies here. He would need to travel to South Africa. Most alarmingly, Elton’s lower leg is numb: the hideously swollen joint is compressing his nerves and blood vessels. Without intervention, it would be a matter of time before gangrene might set in. Then his leg would need to be amputated. We vowed to do something immediately to help.

We then visited Doreen’s home, and met with her family, including her son with hemophilia. Charming and chatty, he asked me, “How’s your child with hemophilia?” I was surprised to know he reads about my child from my newsletters. We sat around for a while by candlelight, as yet another black out plunged the neighborhood into darkness.

The weather is lovely, though there are plenty of mosquitoes at night down the dusty roads we traveled. The blackouts create some suspense, as we never know quite where we are driving or walking!

The last home we visited, around 9 pm, was that of the relatives of the Norman Mubaiwe, the ZHA’s founder and my friend. Norman was the first person to contact me, back in 1997, and we became friends and colleagues. Sadly, he died on the operating table in May 2001. How happy I was to again see Daisy, his cousin, and her son with hemophilia. Daisy’s mother was a hoot, boldly asking me “How old are you?” and then sharing how her grandson showed signs of a head bleed one day, and how she turned to my book to diagnose him. She took him to the hospital, where doctors at first did not believe her. Only through her bulldog advocating, and backed by the symptoms listed in “Raising a Child With Hemophilia,” did the doctors back down, and the child was treated. Amazing example of the power of education, even in an underdeveloped country like Zimbabwe, by a simple grandmother in a rural area!

We had many hugs and clapping when we left, and promised to see one another again. Driving away in the dark, back to Harare, back to the comfortable hotel, I thought about how differently we ended our days. While the families are so appreciative, they don’t know how much gratitude I already receive just by hearing how well they use the help we give them. On to Bulawayo!

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