April 2008

Empowered in Pittsburgh

I visited Pittsburgh this past weekend to spend time with the families at the Western Pennsylvania Chapter of the NHF. What a fantastic event! Kerry Fatula, executive director, and her team did a marvelous job bringing together families from all over Western Penn for a weekend of education, socialization and fun. One thing that struck me right away was the high involvement of women and girls in this community: from girls with VWD to carriers and siblings. More than almost any other place I see that women have really become empowered in this chapter.

Now, I might be a bit biased, since Kerry is a good friend now and I’ve been to this event before and really enjoy this part of the country, but WPCNHF works hard to achieve its many goals for its families. The weekend started with a Friday evening dinner and excellent talk by Dr. Margaret Ragni, hematologist from the local HTC. I was impressed with her breadth of knowledge about the future of VWD and hemophilia. She spoke about current trials for longer acting VWD and factor VIII, and our chances of successful gene therapy. She spoke in easy to understand terms, despite the difficult nature of the subjects.

On Saturday we had a mix of speakers: Rob Dash of Baxter spoke about insurance reimbursement issues, on which he is an expert. I gave a talk about raising a child with hemophilia, summing up the various things we must learn and undergo in 20 years. In compiling this talk, I was a bit dazed myself reviewing how much we have learned and how far we have all come. My friend and colleague Diane Horbacz was here from HHS to give her “Karing for Kids” workshop, an excellent program that actively engages children in hands-on learning about hemophilia in a fun manner. Later on, Laureen Temple of CSL Behring spoke about blood clotting, and Virginia Kraus of Grifols (whom I’ve known for at least 17 years!) spoke about VWD. I ended the afternoon with my empowerment talk, which can be applied to hemophilia as well as many life circumstances. Many companies set up booths and consumers had the chance to visit with everyone and learn more about services and products. That evening was lively, with a full course meal and a very loud DJ with a selection of music that spanned from AC/DC to hip hop to disco. Something for everyone! And there are a few Bob Segar fans in the audience, and I have the incriminating video of Dawn and Rita to prove it!

I met some truly extraordinary families. Some needed coaching in dealing with tricky medical situations: what should they do, who to turn to? Others simply shared with me what they’ve been through. I was thrilled to see Guy, a young man with hemophiilia, who I have known through the years and watched grow up. Guy is special to me: his story was in my first edition of Raising a Child With Hemophilia, and many of you might recall his story. He suffered a devastating spontaneous head bleed as a baby. His mom’s quotation was the longest in the book, serving as a warning to families who instinctively know something is medically wrong with their baby, but who are lulled into thinking it’s only the flu, by families and even doctors! Thankfully, his mom persisted and Guy survived. Today Guy is an accomplished and lovely young man, so outgoing, so active, someone his mom should be very proud of!

See photos of the event here!

Two other families stand out in my mind. One is Chris and Candi, a young couple, parents of a 16-month-old, who has severe hemophilia. In 16 months they have been through so much,  and they handle it with grace, confidence and mastery. I wonder how such a young couple could be so empowered? They embody what empowerment means. Despite all the medical challenges they have come up against, they always find a way through it and learn from it. Also, I had a lovely three hour chat this morning with Mary and David, who have five children. Conor has type 3 VWD, which is severe. Again, they have learned so much, and never blaming others or cursing their fate; they simply and with dignity accept this life, learn from it and even find a lot of humor in their trials. As I often do when I visit with these families, I fly home feeling so lucky to have met them and to share a bit in their lives. And I hope we all meet again! Congratulations to Kerry and her team for a fabulous weekend!

Great Book I Read: Devil in the White City, by Erik Larsen. I always thought DisneyWorld was the embodiment of visionary thinking–until I read this book. The Chicago’s World Fair of 1893 became the spectacular dream come true at a time when nothing like it existed anywhere in the world. In a passion of patriotism and competition, it arose in the minds of two brilliant architects who wanted to outdo the French Exposition, where the Eiffel Tower was unveiled. With only two years, and hundreds of roadblocks including devastating storms, union strikes, and disease, somehow a magical “white” city arose from the mud of Jackson Field, and dazzled the world. What could compete with the Eiffel Tower? A man named Ferris stepped up with an idea for a huge spinning wheel. While this testament to the creativity and untapped potential of the human mind unfolds, the story simultaneously follows the depravity of the human mind, in profiling America’s first known serial killer. Larsen has a wonderful knack for paralleling stories and then bringing them together in the end as the stories historically collide. This book is simply amazing–learn about America during the industrial phase, the event that captivated the world, and a bizzare doctor/killer who stalked the visitors. And DisneyWorld? Well, it isn’t a coincidence that one of the carpenters hired to help construct the marvelous buildings was none other than Elias Disney, whose son Walt no doubt heard his father’s riveting stories about a magical kingdom! Four stars.

Celebrations and Struggles

April 17 is World Hemophilia Day, which was celebrated worldwide this past week. It’s a great chance for hemophilia nonprofits to garner public attention and educate about the disorder. This day was chosen as it is the birthday of the founder, Frank Schnabel, who is commonly referred to as Canadian, because the World Federation of Hemophilia is located in Montreal, but who in fact was American! Before we get all proud of that fact, he moved to Canada to get affordable health care. It’s taken his organization, the WFH, decades to move from a family run nonprofit to a more professional, world class nonprofit, but it has done so! This should give hope to the many struggling hemophilia nonprofits in the world.

Speaking of struggling, the Boston Marathon, also world class, takes place Monday, April 21, not too far from me. I had the pleasure of dining Saturday evening with Steve Petty, a Bayer rep from Utah, who shares my passion for adventure sports and the great outdoors, although Steve lives it to an extent I do not. He is in town to run the Marathon! I thought we would have a nice 90 minute dinner, but we enjoyed over three hours chatting about everything from extreme running, to religion, to life’s mission and purpose, to children (we each have three), to hemophilia in the developing world. Steve would like to come with us sometime on one of our missions overseas, most likely for one of our camps. Steve is also a volunteer Search and Rescue ranger in Utah… pretty amazing! He also volunteers a lot for the hemophilia camps, leading young men with hemophilia to do things they didn’t think possible, like rafting, kayaking and rock climbing. The most amazing, jaw-dropping thing I heard all week was that he beat Dean Karnazes, the self-proclaimed “Ultramarathon Man,” in a race!! (Check out the book by the same title, which is fascinating!) Good luck, Steve!

We lost one race today: Gary Yanga of the Philippines, a beautiful young man with hemophilia and a severe GI bleed, died yesterday. We had been trying hard to keep him going with donations of factor. It wasn’t enough. Life is so harsh in these countries, despite the best intentions and skills of his caring doctors, and volunteers, like Father Don Kill, and our program. We offer our condolences to his family over this loss, and it will spur us to continue to work harder for those who still need us. Factor donations are tight, and there is much less to give. We are grateful for any donations, and for those who do pull through, and for those patients whose lives are made a little easier from these donations.

Great Book I Read: Shackleton’s Way by Margot Morrell. If you like reading about extreme adventure, like I do, you will love this book! The story of Sir Ernest Shackleton, one of history’s greatest polar explorer, is world famous and as riveting today as in 1914, when the story unfolds. His Imperial TransAntarctic journey was to have him be the first to traverse the entire Antarctic on foot. But things didn’t work out that way. What happens is a tale of survival and extraordinary leadership under the worst conditions on earth that seems unbelievable: the ship encased in ice and sinking, leaving 27 men stranded; striking out in three life boats for a week; landing on remote, inhospitable Elephant Island; then, the greatest boat journey in history, Shackleton and two other men travel 800 miles in the open, frigid sea to another island, and then stagger miles on foot to finally approach a whaling station, and then organize a rescue for the stranded men on Elephant Island. Morrell tells this tale of Shackleton’s remarkable leadership in business terms: how you can apply Shackleton’s philosophy and revolutionary leadership to your business. This story can make you a better leader in anything you do. Incredible tale that you will never forget! Four stars.


It doesn’t feel quite like spring yet in New England, but Saturday was SpringFest, the New England Hemophilia Association’s annual family symposium. I was very happy to be home, so I could attend this event, a mere 15 minutes from my house. Our new executive director of NEHA, Kevin Sorge, said it best: “This is like family.” And it is. We were reunited again, for some of us 20 years now, our sons grown but our desire to see this community continue to progress still burning bright.

Even some of the pharmaceutical and home care reps have been part of our lives for 12-20 years. How fast it has gone by!

Linda Price of Virginia will be thrilled to know I finally met her son Greg, now living in the Boston area. Last time I saw Greg he was about 10. It was a lively time, because of how long we’ve all known each other and how rarely we get to see one another.

The speakers and topics were good, and the turnout was excellent, despite the rain. There were lots of children, and teens.

The highlight of the day without doubt was a moment that reduced us all to tears: an award ceremony, with our shining star, Leland Smith, age 15. I first met Leland when he was only a toddler. He has hemophilia, and a devastating inhibitor that at times keeps him wheelchair bound, as he was this day. I know his story well, and I can tell you that not many people has endured suffering like this child. The time he has spent in the hospital, the treatments he has undertaken, the missed school, the excruciating and unrelenting chronic pain; and yet he wants to be a doctor, and is an active lobbyist for NEHA. He has traveled to Washington DC and also to the Massachusetts state house to present himself, to help NEHA get bills passed to protect the rights of those with hemophilia. To know how much this kid has gone through, and to see how at such a young age he is active socially, well… we all crumbled inside in admiration of his character and his strength. Leland reminds me of the words: It is in the deepest valleys that the stars shine brightest; it is pressure that turns coal into diamonds. Congratulations to Leland, a true leader of a new generation of young men with hemophilia. Thanks for making such a memorable day for us all!

Great Book I Just Read: Mawson’s Will by Lennard Bickel.
Speaking of pain and suffering, you haven’t read anything till you have read this book. Dubbed the greatest polar survival story ever, this tells the true story of Douglas Mawson, a giant in the age of polar exploration in the early 1900s. Mawson, an Australian, was already a veteran polar explorer at age 29 when he traveled to the Antarctic in 1911 to seek the magnetic pole and to chart unknown territories. Splitting into three groups, he and two other men part with his crew for a few months and enter the incredibly hostile terrain. Mawson loses both men on his team and is left utterly alone, without enough food, shelter or dogs to see him back, in 50 degree below zero weather with gale force winds…. for one month. How he survives is a page-turning, gripping and miraculous tale. Mawson is responsible for Australia’s claim to 45% of the Antarctic. His tale is legend. This was the fourth time I’ve read this book and it gets better each time. Four stars!

Mission: Dominican Republic

The last day of our trip to the Dominican Republic was reserved to visit the homes of four families with hemophilia. We started out bright and early, the tropical heat slowly rising with the sun, and headed for Bonao, a pretty town located on the roaring Yuca River. It took about an hour to get there, to meet with the Carlos Manuel and Jose Luis Ortiz. With me were Jeannine, executive director of Save One Life (a child sponsorship program), Haydee de Garcia, president of FAHEM, Maria Espinal, nurse at the Robert Reid Cabral Hospital, and Zoraida, general manager of LA Kelley Communications. Zoraida sponsors Jose Luis, a young man with hemophilia, and our visit would check on how he and his brother were.

Meeting with them was pure joy. The Ortiz brothers are natural poets, and every word and sentence is chosen to express kindness, civility and warmth. No matter that they have hemophilia, that their family struggles economically, that they both have severe joint damage that leaves them with unbending knees and hobbling gaits. When you are with them, you are the most important thing in the world. They exude a kind of hospitality very rarely found. Marisa, their mother, had not seen me in about four years and we pounced on each other with hugs. She laid out a fantastic meal. We then walked down to the river, to see the beauty of Bonao. It was a lovely visit. We were sorry to leave.

An hour later we were searching for the home of the Gimenz family. They live on the fringe of Santo Domingo in a place I am sure very few if any Americans have seen. Dirt roads, towering palms, rows of tin roofs with chickens scuttling everywhere, this village or settlement is remote, not easily accessible and devastating for two children with hemophilia. Angel is only six and almost died in December from a head bleed. Thankfully, his mother, also named Zoraida, was educated by FAHEM about symptoms and knew what to do. Angel was hit in the head and began exhibiting symptoms of a head bleed; he was brought to the hospital that night. A miracle considering Zoraida does not own a car nor have much money, and transportation is questionable and unreliable. Angel’s older brother Andres watched and listened as we heard this story, occasionally smiling and dropping his head shyly when we looked at him. He had just attended camp with us. An extremely handsome young man of 15, he has a killer smile and a friendly manner. He gave me a brief tour of their tidy wooden home, only three rooms, shared with four dogs, cats and a hen and rooster in the back. Both boys need sponsors, so if you are interested in helping this family, please go to www.SaveOneLife.net and let us know!

Next stop, the Vasquez family, who live closer to the capital and down a small tienda or shop selling candy and things. The shop is really just a window from which they display what little they have to offer. Gabriel is the young boy also looking for sponsorship. Last stop was the home of Misael and Jayro Medina. Misael attended camp as a counselor and did a great job. His brother Jayro, deeply religious, has not walked in years. So many bleeds left him bedridden, during which time his muscles atrophied. But he does not whine or complain but shows again that warm hospitality. Though these are men, we will still look for sponsors to help ease their burden in life. Their father only earns about $25 a month, and life is expensive in the city.

See all the trip photos here.

Seeing the conditions of the poor, the crippled joints of hemophilia, might leave a person feeling overwhelmed, stunned, depressed. But not us. We feel honored to have met these families, impressed at how confidently they face life’s harsh challenges, and motivated to help them financially through our program. We saw the kids at camp who are already benefiting from having a sponsor–they use their sponsorship funds to travel to the hospital, to buy medicine, to stay in school. The Ortiz brother attend college and will one day get jobs in the tourist industry, where they can charm visitors to their land, thanks to the support from Save One Life, for funds, and Project SHARE, for factor. They are one success story among many; and you can help us have more. Adios for now!

Camp: Dancing, Swimming, Learning, Bonding

Yesterday was so busy at camp I didn’t have a second to blog. The day started with some wake-up exercises on the lawn, in this case a dodge ball game. All the campers and staff are wearing T-shirts with the camp name on it–“Yo si pudeo!” After breakfast, the campers listened to a lecture by a lively orthopedic surgeon who used Bob the Puppet (renamed “Pepe”) to demonstrate joint damage in a kid-friendly way. Then off to the pool! Wow, did the children come alive! All campers are divided into groups, who give themselves team names (like the Stars, or Alpha-Omega), chaperoned by teens with hemophilia, who used to be campers themselves. And they were wonderful! Like big brothers to their little “hermanos” with hemophilia.

After lunch came another lecture, then arts and crafts, with board games for those who opted out of arts and crafts. Then practice of the big event–a talent show! And what a time it was. What imagination! Each team presented a skit, something to do with hemophilia and empowerment. No one told them what to do. They just instinctively wanted to do skits that showed how they were empowered and who anyone could be empowered. Most of the skits were hysterical, showing comical situations and exaggerated characters. But one took a serious turn when it showed a father coming home drunk and striking his child with hemophilia, the mother helpless. Domestic abuse is a huge problem in Latin America and the boys deftly integrated this social problem with hemophilia. Prizes were awarded to everyone, and then the real fun began. Dominicans are expert dancers and the DJ (Horatio, former camper) pumped out some wild merengue and salsa for everyone to dance to. Not even hemophilia and arthropathy can keep these boys from dancing. We had a conga line, contests, and everyone–from patient to staff to hematologist and nurse–got in on the fun.

Today was a bit more subdued. At least no bleeds as a result of the dancing, thankfully! The camp celebrated a Catholic Mass in the pavilion after breakfast, followed by heart warming testimonials from the older boys about the role faith plays in their life with hemophilia. They spoke directly to the younger boys, instructing them to pray and keep faith even in the darkness of a bad bleed. Later, everyone went for another swim, and then had lunch. The weather was beautiful, sunny and hot.

Though camp was only two and a half days, close bonds were formed, even for the new boys. We enrolled more boys into Save One Life, to help them financially. Tomorrow we will visit some of the boys in their humble homes.

Visit here to see all camp photos.

The bus arrived and everyone departed back to Santo Domingo, a quick jaunt, to congregate at the Robert Reid Cabral Hospital and to await some anxious parents. Happiness shown on the faces of both parents and child as they were reunited. The boys were armed with toys donated from the New England Hemophilia Association, and infused with factor donated from Project SHARE. Does it get any better than that? It was a great camp; it seemed so effortless, but tremendous planning and coordination goes into a project like this. We will miss all the boys dearly as another year passes. Hasta el proximo año !

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