Diamonds in the Slums

To me, there’s nothing more rewarding or satisfying than to travel through clogged urban streets and alleys, or jostling out on half finished roads, or sometimes no roads, in the broiling heat to visit hemophilia families in their homes. It’s like hunting for elusive diamonds. Amidst the trash, slums, poverty, sweltering humidity, you sometimes get an unexpected surprise that makes it all worthwhile. We had three of these happen to us in the Dominican Republic following camp last week.

Last Tuesday we visited a family right in Santo Domingo, the capital and the oldest city in the Americas. That’s right: this is where Columbus came four times during his voyages, to the island of Hispaniola. Dominicans are a beautiful blend of European, indigenous people, Africans (brought as slaves) and Spanish. Santo Domingo is home to the first hospital in the Americas, featured here, now in ruins.

I think we saw all these nationalities in the Torrres family. We met all three children: Alexander, Bryan, and Victor. Alexander and Victor had been at camp with us all week– but no one knew they were brothers! They have different last names, and this underscored the need to get the national registry more precise. The foundation FAHEM needs to be able to know that two children are brothers, not from their names, but also from their shared address.

The family lives in a two room dwelling that they rent. Rent is 40% of their $95 a month income. Try to think how to live on that with three kids with hemophilia! It boggles the mind. Only the father works. The young mother stays home, though there is little to do when there are only two rooms. She spends all her time with the children, shuttling them back and forth to the hospital. We are enrolling all three children in Save One Life.

On Wednesday, we started our day by visiting the de Jesus family, in the barrio La Cruz. It was about a 20 minute ride outside the capital. Rural poverty is quite different than urban poverty. In some ways it’s worse, because you lack plumbing and water. But then, there is space, more quiet, more nature. Damaris lives in such a place: a two room house with a tin roof that cooked the kids inside like a microwave. Haydee de Garcia, founder of FAHEM, the Dominican hemophilia society, and I were sweating by the time we hiked up the little hill to see her. With us was Haydee’s nephew Luiggi, who served as our translator.

No refrigerator, no bathroom, no running water. And yet, her tiny house was as clean as could be, with flowers on the small kitchen table, and the floor swept. The children were clean, and Damaris was carefully groomed. I was very impressed. Wilmer fussed, and I bent over to whisper in his ear. Maybe he can hear; he calmed down quickly and his eyes grew wide. My first job out of college in 1980 was working with mentally and physically handicapped children and adults, so I am used to being with and caring for these children. I’m not shocked and I don’t do pity, but I can empathize. Both boys have hemophilia. To bring Wilmer to physical therapy each week, Damaris has to carry him in her arms on the public bus, and then walk. As a result of his disability, Wilmer’s back is rigid and his limbs taut. It cannot be easy at all to bring him. I tried to hold him and it was nearly impossible. And she knows she has a lifetime of this ahead of her.

When we entered the house, it was allegedly to see Darling, Damaris’s five year old. What we did not expect was that her other son, Wilmer, age 18 months, had something wrong with him. Damaris told us that just in February, her baby with hemophilia had a spontaneous head bleed. She rushed him to the hospital, but he was in a coma by the time she got there. Now he was permanently brain damaged. He is blind and she does not know how much he hears. We were saddened by this tragic situation in front of us: Damaris and her husband earn only a little, have no luxuries at all, not even a fan to keep her baby cool. Inside the small house, the temperature was about 90 degrees, and there was no way to keep away the abundant and voracious mosquitoes that nibbled on our ankles.


But Damaris never complained and was humbly grateful when we told her we would find sponsorships for both boys, giving her an additional $40 a month. We first decided they needed a fan more than anything, to keep the baby cool. And we gave her the money on the spot. With many hugs and smiles, we left for the next family.

Further out into the country, we came to the De la Rosa’s house, a lovely but modest home on a dirt road. Three big boys with hemophilia: Anderson, Alexander and Anthony. Their sister, Angelina, sat in on the visit. The boys are all in their late teens and look fantastic. No joint damage, well developed musculature. It got me wondering. These handsome guys didn’t look quite–normal.

As we did the intake interview for Save One Life, I started asking about their extended family. One sister died in childbirth. Uncontrolled bleeding. Another died from her period. These boys don’t get joint bleeds but get a lot of nosebleeds. Haydee and I looked at each other: could they have von Willebrand instead of hemophilia?

We asked them to get tested at once so we can get their diagnosis straight. We have held off getting them sponsorships until this is done. But all in all, I was thrilled that we made the visit. They were diagnosed about 10 years ago, and could very well be misdiagnosed. Though the mother said that factor VIII concentrate “works” on the boys, it could well be that a product was used that contains von Willebrand factor.

A surprise: they don’t have hemophilia but VWD!

I wish we had time to visit every patient, in every country. Home visits are the single most important thing I can do, and I love doing them. In these three visits we learned something new, something important, and something the national foundation needs to know. And the stories we hear make us humbled, grateful and better people. As Mother Theresa once said, “The poor have much to teach us.”

See photos from the entire trip here.

Great Book I Just Read: Krakatoa by Simon Winchester
One of the world’s worst natural disasters took place on Monday, August 27, 1883, when the small island of Krakatoa in the Sunda Strait near Indonesia exploded and destroyed itself. The blast– believed to be the loudest sound ever known–was heard thousands of miles away and killed over 36,000.

Author Simon Winchester is a geologist by education and trade, and now is an engaging writer. The book is not about a disaster, as much as it is about geology, and the science of volcanoes and the earth, which I found to be absolutely riveting. I never knew about this and I cannot wait to learn more about Mother Earth and from where this self-destruction originates.

You’ll learn about subduction and tectonic plates, about how only recently did scientists agree that the earth’s plates are moving! You’ll learn about early trade in East Asia, and about Indonesia in the 1800s. Winchester even ventures to say that the devastation, and the poor handling of it by the Dutch, left the door open for radical Islam to invite itself in. Indonesia is now the most populous Islamic country on Earth. How nature changes politics.

I loved this book, but I can critique it on two things: first, Winchester has a choppy style, and the book swings like a pendulum from this topic to that. Sometimes it seems that the eruption is only a blip, a thing standing in the way of his discourse on geology. The second, most disappointingly, is that although 36,000 died, you don’t hear about any of their stories. They are not as important as the rock, the plates, the volcanoes. I kept waiting to read about the people, what happened to the people? Hardly a word. A chapter about the victims—who were they? Who survived and how?– would complete this amazing story. Three stars.

Florence’s Story

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

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

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

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

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

See all the photos here.

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

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

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

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

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

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.

Do They Know It’s Christmas?

With Christmas coming, we always play a long iPod list of holiday songs. Our tastes run from traditional ones, like Bing Crosby’s “White Christmas,” Perry Como’s “O Holy Night” and Johnny Mathis’ “Christmas Song,” to Queen’s “Thank God It’s Christmas,” Elvis’ “Why Can’t Every Day Be Like Christmas?”, Run DMC’s “Christmas in Hollis,” and Sting’s “Gabriel’s Message.” But our favorite is “Do They Know It’s Christmas?” by Band-Aid.

You might recall this was a song written and recorded in 1984 by several top English and Irish recording artists to help raise money for famine relief in Africa. “The record was released on November 29, and went straight to No. 1 in the UK singles chart, outselling all the other records in the chart put together. It became the fastest- selling single of all time in the UK, selling a million copies in the first week alone. It stayed at No. 1 for five weeks, selling over three million copies and becoming easily the biggest-selling single of all time in the UK,” notes Wikepedia. The video can be seen on YouTube.

It’s a timeless song, about the timeless plight many African countries face. I think of it now as we try to help our hemophilia brothers in Zimbabwe, a country collapsing under economic duress. This is a beautiful country, filled with civil and peace-loving people, where literacy rate is 95% and which once served as the breadbasket of Africa. I was there a year ago at this time, and my visit has haunted me ever since.

Now, in addition to the highest inflation rate in the world, and 80% unemployment, it suffers a devastating cholera outbreak. Cholera is a killer; it is transmitted through food and water, and can claim a victim within 24-48 hours through dehydration. If you’ve watched CNN, you will see how the disease has spread. Total U.S. humanitarian assistance to Zimbabwe’s food and health crisis is more than $226 million since October 2007, but the disease continues. The UN has reported a total of 13,960 cholera cases with 774 deaths since August 2008, affecting all provinces in the country. The actual death rate is said to be even higher than this reported number.

In the midst of all this, how is hemophilia care faring? There is little food in the country, minimal health care, and no treatment for hemophilia. I am proud to say that the US is the number one aid donor to Zimbabwe, and likewise, Project SHARE is the number one donor of factor to Zimbabweans with hemophilia. And I’ll be the first to say this still isn’t saying much. The needs are deep. We are now sponsoring individuals in Zimbabwe, supplying factor and struggling to help Elton, an 18-year-old with a grotesquely swollen knee from repeated untreated bleeds. He is in danger of losing his leg, and even life, if we do not get him medical aid.

In the midst of everything–famine, disease, unemployment, devalued currency, no gas, no foreign exchange, little medicine—the Zimbabwe Haemophilia Association perseveres. When you think about our current economic situation in the US, take a moment and think about theirs. And they do not complain, but shoulder their burdens with grace. How do you celebrate Christmas when there is so much loss, and hopelessness? They will still celebrate. The almost amazing news to me is that they will hold their Annual General Meeting, in Harare, despite the outbreak and lack of food. Nothing seems to stop them! While our national hemophilia meeting overflows with money and give-aways, nice hotel rooms and so much food we throw most of it away, their meeting will be held at a hospital, in a bare room, with no food, filled with hungry people. hungry for medicine, food and hope.

Do they know it’s Christmas? They do, in the purest sense. Do we know? Christmas is a time of charity. That’s what gift giving is about. Please think to help those in Zimbabwe with a simple gift: $10 is a fortune to them. Let’s make a donation to their meeting, to provide food, travel money and maybe even some Christmas gifts… go to www.SaveOneLife.net and make a one-time donation to Zimbabwe, to our brothers with hemophilia, to let them know it’s Christmas.

Do They Know It’s Christmas? Band-Aid 1984

It’s Christmastime
There’s no need to be afraid
At Christmastime, we let in light and we banish shade
And in our world of plenty we can spread a smile of joy
Throw your arms around the world at Christmastime

But say a prayer

Pray for the other ones
At Christmastime it’s hard, but when you’re having fun
There’s a world outside your window
And it’s a world of dread and fear
Where the only water flowing is the bitter sting of tears
And the Christmas bells that ring there are the clanging chimes of doom
Well tonight thank God it’s them instead of you

And there won’t be snow in Africa this Christmastime
The greatest gift they’ll get this year is life
(Oooh) Where nothing ever grows
No rain nor rivers flow
Do they know it’s Christmastime at all?

(Here’s to you) raise a glass for everyone
(Here’s to them) underneath that burning sun
Do they know it’s Christmastime at all?

Feed the world
Feed the world
Feed the world

Let them know it’s Christmastime again

The CCBF Gala Ball: It All Started with a Child

I asked myself not only quietly, but on stage, aloud to the crowd of some 600, what was I doing in New York City, on stage, sharing an award with three remarkable celebrities on my birthday? Less than a week before I was in the sweltering heat of the Philippines, visiting families with hemophilia who earn only about $3 a day.

I attended the incredible “Breakthrough Ball” Gala fundraiser for the Children’s Cancer and Blood Foundation (CCBF) on Tuesday, October 28, not only as a guest but as an honoree. Actually Save One Life was being honored, the nonprofit I founded in 2000 to offer direct financial sponsorship to the children with hemophilia in the developing world. Also being honored were rapper/music producer Swizz Beatz, actor Steve Guttenberg, and former New York Yankees pitcher Al Leiter. To see my name on the program with these gentlemen was humbling.

This was a black tie event, my first. After lavish cocktails and hors d’oeuvres, we were seated. I sat with Dr. Donna DiMichele, renowned hematologist of the New York Presbyterian Hospital, who is on the board of directors of the CCBF, and who recently just joined the board of Save One Life, and also Tara Reddi and Janis Cecil (with husband Charles) of the Marlborough Gallery. I truly enjoyed chatting with artist Hunt Slonem, who sat to my left. To make the evening even more special, my daughter Tara attended as my date, as this was also her birthday!

Actor Charles Grodin opened the evening, and surprised us all with a guest appearance by singer Lou Christie! He sang his signature “Lightnin’ Strikes,” a song released in 1966. I loved listening to it in 7th grade, and still do! 

Then Charles Grodin aired a music video by Swizz Beatz, which showed him visiting children with cancer in the hospital. He created a theme song for the CCBF and was the first to receive an award. I must confess I had never heard of him (I think I’ve been traveling a bit too much these past few years) but what an exceptional young man to be so devoted to charity! 

Then Steve Guttenberg was presented with his award. I didn’t realize this comic superstar had done so many charitable things. From spearheading an effort to get 50,000 eyeglasses for low income children, to volunteering 16 hour days incognito to help Katrina victims, to funding the “Guttenhouse,” a transitional home for foster children. 

Also accepting an award was Al Leiter, who has 19 years in the Major Leagues as a pitcher, and has won nearly every philanthropic award MLB offers, including the 2000 Roberto Clemente Award. He is now a baseball analyst for the YES Network. He is one athlete renowned for his charity, having given more than $1.5 million since 1996 to various children-related charities in the New York area and in south Florida.

An incredibly moving speech was given by Ron Iervolino, president of CCBF, that had many of us in tears. His own child suffered from cancer, and he appreciates the generosity of the audience and of the celebrities in helping to fund research for a cure. Ron presented me with my award, and again, I was humbled to accept.

It was truly an honor to be included among such amazing people. We often hear so many bad things about celebrities; it was refreshing to be reminded that so many of them work quietly and generously. I thank the CCBF for honoring them. I had a warm handshake from NFL great Tiki Barber, and then took the podium to thank the many people involved in this evening.

I accepted the award, not for what I have done, which by my standards hasn’t been much yet, but as a pledge for what I will do. I promised the audience that this evening, on my 51st birthday, I would enter the second half of my life completely dedicated to Save One Life, which will become the voice of individual patients with hemophilia, impoverished and suffering. I pledged that I would not rest, or retire, and would work until my last breath to alleviate the suffering of children in the Third World with hemophilia.

While standing for photos with the honorees, I must comment on how friendly, down-to-earth and kind they each were. I wish we could give more attention to celebrities like these who do such outstanding work for children who suffer. Ron and I both know: nothing is worse than watching your child suffer. And nothing is as amazing as seeing strangers help and care.

So how did this all happen? How did I end up having this photo with three such handsome celebrities? I have to thank Tara Reddi first and foremost. Vice president of the Marlborough Art Gallery in NYC, her cousin’s son, Bahnu, has hemophilia and lives in India in Vijiawada. He happened to be registered as a beneficiary of Save One Life. When Tara learned this, she decided to learn more about Save One Life. She was so touched that we were helping children like her cousin’s son, and offered to help us. Soon, she became a board member, and soon after, she had a fundraiser for us at her Gallery. Dr. Donna DiMichele attended that event, was surprised to learn about Save One Life (Donna and I have known each other for years, but we’ve been quiet about Save One Life till now) and suggested my name as honoree for tonight. So thank you, Tara and Donna! You have helped our small organization grow in so many ways.

I’d also like to thank Les Lieberman, chair of CCBF, for allowing me this great honor. And to the many corporations who donated to CCBF on behalf of me: Bayer Corporation (Terry, Paul, Marianne, Bill, Joe), Baxter BioScience (John, Michelle, Pete–so sorry the snowstorm kept you away!), and Grifols (Ray, Eva, Virginia, Kathy and Chris). Thanks also to attendee Neil Herson, president of ASD Healthcare, who sponsors 46 children through Save One Life, and to Patrick M. Schmidt, CEO of FFF Enterprises and Save One Life board member, who also sponsors 46 children, but could not attend. Thanks to those who donated but could not attend: CSL Behring, Ellis Sulser of Factor Support Network; Barbara Chang of National Cornerstone Healthcare; Shari Bender, mother of a child with hemophilia; and Eric Hill, president of Biolife.

You all made the evening very special, and given us all new motivation to ensure the vision of Save One Life is fulfilled–that every child in poverty with hemophilia will have a sponsor, someone who cares. No one, no child, should have to suffer alone or suffer at all. Thank you and God bless you who work on behalf of ill children.

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