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.
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.
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.
Elton and Neil HersonLaurie Kelley and EltonDr. Len Valentino, Neil Herson, Laurie Kelley and EltonAudrey with Elton
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?
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 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.
Time to wrap up this amazing trip. On Sunday, October 19, we were still in Dumaguete, a small town on the island of Negros. Today was our day to visit patients in their home, always the highlight of my trips. The weather was brilliantly sunny, blue skies and 100% humidity. The ride was brief, as the patients we visited were close by. First was the home of Raynold Bilandal, two years old, factor VIII deficient. A chubby, well cared for child, he lives in poverty materially, but in love richly. Their house sits back a bit from a main road; it’s open and airy, with no screens to filter out mosquitoes. They own little: simple beds, a table, a cassette player for the treasured music Filipinos love, a pet parakeet. This is a family with many members who have hemophilia: brothers, uncles, and many children who have already died. We enjoyed our visit very much, and took photos for Raynold’s sponsor, Joe Cardoza, son of Save One Life’s executive director.
Our next home was in Tanjay City, a small village, to see three patients who are enrolled in Save One Life: Carymar, Reymark and Jhon. We waked through the village, garnering stares from the villagers, and soon a following behind us as the children whispered about the foreigners in their midst. We saw a man getting a shave in the open air by his neighbor, chickens and roosters scuttling about, washing being hung to dry and water being pumped from a well. The ground was thick with mud so we stayed close to the stones that formed a walkway; I noticed deeply embedded coral in the ground, wondering if this was once an ocean floor? First we came to Jhon’s house, with its bamboo walls, thatched roof, and mud floor entrance. Jhon is doing fairly well, and is being raised by his grandmother, a spry elder woman (seen being interviewed in the photo by Andrea Trinidad-Echavez). As we spoke with Jhon, the crowd swelled; some were family members, and others were neighbors. Jhon attends school, and uses Save One Life funds to get medical treatment.
At Reymar’s HouseCarymar
Next door practically is his cousin Carymar. Several family members live in his house. They have the basics: beds, kitchen, a TV. But they are very poor. This was a special day: Carymar’s 19th birthday! We sang happy birthday to him as we interviewed his family about how they are doing with the Save One Life program. They are all deeply appreciative of the help.
After the visits, we decided to go to the local cemetery, to seek out the graves of Jeffrey’s four brothers. If you recall, Jeffrey is a 21-year-old from Manila we met, who is in college studying psychology. He wants to be a therapist for the young men with hemophilia in the Philippines. His ambition derives from the pain he experienced losing four of his brothers to hemophilia. He himself rarely is able to afford to travel all the way to Dumaguete to see the graves. We promised him we’d find them and then email the photos.
Easier said than done. The graves are above ground mostly, a la New Orleans, and stacked, creating a maze of graves and tombs that are not registered in any fashion. We had to walk for over an hour in about 95-degree heat to find them. The cemetery was not maintained and so vines and plants covered the tombstones and markers. We walked along, reading the names: Torres, Ramirez, Rodriquez. No luck. Three young boys followed us, and soon we paid them to start clearing away the undergrowth to read the graves and find the ones we wanted. Finally, we located them. We called Jeffrey who was really touched at our persistence. We paused a moment in prayer, to acknowledge the suffering these graves represent: hemophilia boys and men who will never complete their lives, who died only from lack of affordable treatment. For while there is rarely factor to purchase, even FFP and cryo is too expensive for most Filipinos to afford. Early death is a constant here.
As we left, we had one humorous moment when we spied three goats, tied up in the broiling sun to three graves, left for the day by the owners to nibble away the grass. Third World lawnmowers.
On Monday, October 20, we headed out by Ocean Jet (2.5 hours), and then by car (3.5 hours) to Ozamiz City, on the large island of Mindanao. We were deep into Philippine countryside now, and I was constantly started at. Not many westerners make it down here, I gather. The scenery is gorgeous: rice fields carpeting the landscape, hemmed in by towering mountains. The sky is most dramatic here: from the Ocean Jet, the clouds roiled up like white cotton dolphins leaping out of the liquid blue. Water buffaloes plod in rich mud, their hoofs sucking with each step as they plough.
On Tuesday I awoke with a startling surprise: 27 bug bites on my face. My eyes were half closed in reaction, my skin covered in welts. Just lovely. Apparently I had accidentally left the screen door open all night in the bathroom, and the mosquitoes had a midnight buffet. I was a bit worried as malaria and dengue fever are widespread here, but so far so good.
Despite my appearance, Tuesday was the climax of the trip for me, because I visited my child, whom I sponsor. Kent Tan is a darling boy, living in a rural community, some two and a half hours from Ozamiz City. His parents were so grateful for our efforts to visit. He lives in a small but clean home with his parents, and brother Karl, sponsored by my friend Kyle Callahan (who also has hemophilia). Karl as just getting over a leg bleed, with factor we had donated. Both boys look in great shape! His mother, Hydeeh, stays home with both boys. The father Juderick, only earns $100 a month, not enough to pay for medical treatment for two boys with hemophilia. The use their Save One Life money as a savings account, in case of medical emergency. Kyle and I give them $40 a month combined, which is an additional 40% of their monthly income. You can see how well Save One Life helps! The parents are very smart about how to use their finds. When I aksed them what else I could do for them, they very humbly declined to ask for anything more, counting their blessings.
I have so much more to write about this amazing trip, but the hour is late and I have severe jet lag. And a busy week coming up! If you’d like to read in depth about the trip, please go to the Save One Life website, where we will post our newsletter OneVoice, in a few weeks. The November issue will feature the trip, and will have more photos. Also, I will post photos from the trip as soon as I complete labeling them, in about a week.
Our trip took us to six cities in 12 days, by car, speedboat, ferry and airplane. I’ve logged in hours by each, seeing the tropical countryside, quaint villages, busy hospitals, magnificent churches, and homes of the poor. Father Don has been an excellent host and traveling partner, displaying deep compassion but logical analysis and a desire to improve the lives of those with hemophilia, a mission that goes above and beyond whatever job description he has as a Columban priest. I was privileged to visit the home he maintains in Ozamiz City, where he houses 26 teens from impoverished backgrounds, who are now attending high school or college, and who will all have a promising future. Hemophilia is “just” a moonlighting mission for the indefatigable Father Don! God bless him for that: these patients need every angel they can.
Rice paddies
This has been one of the most amazing trips I have ever taken, from the sheer beauty of the Philippines, to the devastating poverty and suffering that stalks each hemophilia patient like a predator, waiting to pick off unlucky victims. I don’t know why, but I have never seen such wide scale effects of untreated hemophilia: joint crippling, pseudotumors, intracranial bleeds, loss of life and amputations. The Philippines is in dire need of help. One way to help is to support individual patients so they can have the funding needed to get to the hospital, or to buy cryo of FFP, or even factor. Please consider supporting a person with hemophilia from the Philippines. We will enroll all the new patients we have met. Just $20 a month can change their lives! I know they have forever changed mine.
Salamat (thanks) to Father Don Kill, the Columban MIssions for housing me in the Philippines, to HAPLOS, to the dedicated physicians we met, and to our skilled and patient driver Honorato!
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