Hemophilia Camp

Inhibitor Camp This April

Camp is coming early this year!

US hemophilia families with inhibitors are invited to apply for the third Inhibitor Family Camp weekend to be held April 13-15, 2012 at The Painted Turtle Camp in Lake Hughes, CA.

This program, run by Comprehensive Health Education Services (CHES) and sponsored by Novo Nordisk, is designed for families with a child age 6‐19 with an active inhibitor. These camps are special: children with inhibitors often report that they cannot participate in many of the activities offered at a traditional hemophilia camp due to the threat of injury. Or that if they do choose to participate, they may spend the rest of the week in a wheelchair watching from the sidelines.

Inhibitor Family Camp provides these children and their families an opportunity to come together with their true peers in the hemophilia community.

Space is limited so all registration materials must be completed in full by February 17, 2012. There is no cost to families associated with Inhibitor Family Camp. For additional information, please call Comprehensive Health Education Services at 877-749-2437 or visit www.inhibitorfamilycamp.org.

Great Book I Just Read
Steve Jobs by Walter Issacson (Kindle version)

This is an incredible read, quite possibly the best book I read in 2011. Not a perfect book, however, because there are gaps, almost as if Issacson rushed to get it out following the death of Jobs on October 5. Issacson was asked by Jobs to write his biography, and despite Jobs’s well known control issues, gave full control to Issacson, and engaged in 40 interviews with him. Issacson also interviewed Jobs’s family, coworkers, enemies, friends and wife.

This 600 page tome traces Jobs from his birth, adoption, and early childhood years all the way through his stint at Reed College, dropping out, founding Apple in his father’s garage, and the impact his adoptive father had on his curiosity about all things electrical and his father’s love of perfect workmanship, as we see in Apple products today. It’s almost two books in one: a fascinating account of the rise of the personal computer industry in Silicon Valley, and the infamous competition with Bill Gates and Microsoft (hard to believe Jobs and Gates were born in the same state, same year!). For those of us who lived through these years, it brings back memories and completes a story. For the new generation who takes these marvelous machines for granted, this history is a must read.

The other “book” is a searing account of Jobs’s psyche: his infantile approach to managing people, his tirades, temper tantrums, his eating disorders, control issues, his obsessive perfectionism, his total lack of empathy, his need to squash others’ self-esteem. If there is one psychological term you can hang on him, it’s narcissism. He was a genius, a visionary who saw things before they were built, who knew exactly what he wanted because he could already see it before him when no one else could. He invented an industry that has completely changed people’s lives and the course of history. He didn’t do market research to find out what the customer wanted; he knew what people wanted. He created need. But he left a scarred and brutalized wake, and no doubt his children will tell all one day. I have been an Apple customer since the 1980s, from day 1. I love the products, the marketing, the beauty of the machines, the integrated approach to everything Apple makes. They make intuitive sense, and Jobs knew this. He knew so much, saw so much, and had he lived, his impact would have been even more tremendous. I couldn’t help but feel sorry for his children, and have no doubt that his cancer originated from his chronic high stress levels and internal obsessions. When you go into an Apple store next time, look at the Restroom sign. The grey color took a team, including Jobs himself, 30 minutes to decide what shade of grey. Jobs involved himself at every level. When you live your entire life to that extreme, it takes its toll internally. What price genius? This book seems to mournfully ask that, while at the same time, marveling at an extraordinary man who led a great team that changed the world. The frustrating part comes when even Issacson, for all he interviewed Jobs 40 times, still could not but scratch the surface was what drove this man. No doubt, Jobs wouldn’t let him in; maybe no one got in. Five/five stars.

Hatching Butterflies: Metamorphosis

I woke up Sunday morning at 6 am, after being serenaded by roosters all night long, who echoed their cries into the lush rolling hills outside Santo Domingo, the capital of Dominican Republic. Morning in the DR is lovely, with mist clinging to the trees, and the sun just started to bake the ground. After a chilly shower, I left my sleeping roommates (including my 15-year-old daughter Mary) to join about 50 boys with hemophilia to do morning exercises with “Cuchito,” their coach. If only we could wake up this way every morning of our lives!

After fun exercises and stretching, to get the boys’ joints limber, we marched– and I mean, marched–off to breakfast, always a healthy and hearty meal. The boys then prepared to leave their their DisneyWorld, their adventure land, their annual mecca. Packing, laughing, hugging–the Dominicans are known for their great affection towards each other–the boys reluctantly made their way to the bus and back to Santo Domingo.

But what a time we had! On Friday the boys were treated to a surprise: a visit from Marcos Diaz, world class long distance swimmer. Marcos gave a spellbinding speech poolside about discipline, perseverance and setting goals. He isn’t just a swimmer: he was born with severe asthma, and was not expected to ever do much in life. He didn’t let his asthma stop him, and set out to conquer it through swimming. We took many photos, and I think the adults were as excited to meet this national hero as the children.

We had carnival, arts and crafts and then, the Talent Show!! It was wonderful: full of music and dance, and unexpected but hilarious skits from the teens as they mimicked the adults–including the founder Haydee de Garcia, and me!

Camp “Yo sí peudo” has ended and was a magnificent, fun time for all. If you look at the logo on Ronnie’s yellow shirt, you’ll see the camp theme for this year: metamorphosis. It’s our tenth anniversary, and we’ve watched little children grow to men, from caterpillars to butterflies, ready to spread their wings. Knowing they have hemophilia, some disabilities, and even poverty, nothing could be greater than the smiles on their faces, and the hope in their hearts.

Please view our gallery of camp here. 

Fund Raising Dallas Style

Yesterday I enjoyed western hospitality at the Hearts for Hemophilia gala fundraising event hosted by the Texas Central Hemophilia Association. I was greeted at the airport by long time friend Andy Matthews and his 2 year old son Keeton. What a change from London! If you’ve never been to Dallas, it’s easy to describe: hot, flat and big! Big buildings, monumental, and very friendly people. They treat guests well!

The event was spectacular. About 200 people showed up in black ties, cocktail dresses and with open checkbooks to bid on a silent auction and later to play casino. But first, Shanna Garcia, president, welcomed everyone and presented the theme: Moms Making a Difference. She mentioned the role women play in raising a child with hemophilia, and cited some of the audiences in the room. Then she showed a video of Camp Ailihpomeh (Hemophilia spelled backwards), which highlighted the great work of Texas Central, and the joy of the campers.

Then I got up and promptly put a damper on things by showing a multimedia slide show about the plight of those in the developing world. Well, it wasn’t so bad. After sharing a few stories and statistics, I also showed what happens when factor, funds and training flow into the developing world: night and day! I highlighted the Dominican Hemophilia camp “Yo si puedo,” with music a la Gloria Stephan, to keep things upbeat. Many people were moved by the photos and asked to sponsor children and even come on a trip with me!

Shanna and her colleagues Christy Argo and Shelley Embry (executive director) presented me with a huge cardboard check… and a real one for $1000 for Save One Life, our child sponsorship nonprofit.

We noted sadly the passing of Paul Newman, a tremendous friend to the hemophilia community, through his Hole in the Wall Gang Camps. I shared with the audience that Newman’s camp left a lasting mark on my children who hands down rated it way better than DisneyWorld. Why better? it made each child feel that they were the center of the universe for one week; that they were unique, valued and important. No amount of rides and characters can take the place of that.

I loved getting to meet so many parents who have been on my mailing list for years: to hear their stories, share some laughs and bond. What a great way to cap off a long week from home!

My deepest thanks to Andy, Shanna, Christy, Shelley and everyone who made this evening so hospitable, enjoyable and exciting! Thank you for the support for Save One Life. Dallas–it’s a great place to visit!

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 !

Hola! From Camp in the DR

Tropical, warm, friendly… these words always come to mind when I am in the Dominican Republic, a country that I have been fortunate to have worked with for 10 years now. Today was our first day of camp, the 9th annual “Yo Si Puedo” (Yes, I Can!) bringing together 42 boys with hemophilia for three days of fun, socialization, education and medical treatment. 

We arrived last night and were met by Mecho Benoit, good friend and executive member of the Fundación Apoyo al Hemofílico (FAHEM), the national hemophilia organization. We drove to her sister Haydee de Garcia’s home. Haydee is the president of FAHEM. Any baseball fans reading this? Her husband is Damaso Garcia, former second baseman of the Toronto Bluejays. They have a wonderful son with hemophilia, now 23.

We brought with us lots of factor, toys and supplies for the 42 campers. After a wonderful meal (food is delicious and fresh in the DR) we repacked a bit and retired, worried a little about the weather as it might rain.

We had overcast skies today but no rain. We met up with the boys and their moms at the Robert Reid Cabral Hospital in the capital, Santo Domingo. After some joyful reunions, we toured the new hemophilia wing of the hospital. Most impressive! Funded by the Bill Clinton Foundation, it was amazing to think that just 10 years ago, there was barely any care at all for patients with hemophilia: no factor, little training, certainly no place to call their own. But one thing the DR did have was dedicated people, like Haydee and Mecho, and also doctors Joanne Travers and Rosa Nieves.

Camp was just 20 minutes away at a lush and beautiful location in San Cristobal. Today’s agenda was settling in, some athletic and team building games on the basketball court by Raphael, a volunteer phys. ed teacher, arts and crafts, lunch and a lecture by a dentist, which was actually informative and a lot of fun.

We also took the opportunity to interview some of the campers to update their profiles for Save One Life. I won’t lie to you: not everything is happy and rosy in the DR. Too many children, far too many, are crippled, especially the teens, but even some of the younger ones. There are many reasons for that, which I’ll try to share tomorrow (if I can blog).

This is a special camp for us. Save One Life raised enough funds last year to provide 50% of camp funding. We have provided almost all the factor. But most of all, I witness that all those boy I met when they were eight years old, are now young men, returning as counselors, ready to help the next generation. I know I am getting old when I gasp at their height, their maturity, their potential now being realized. Where did those little boys go? Now we marvel at the younger boys, just learning about leaving home, socializing with other with hemophilia and experiencing camp for the first time. Whatever the language or culture, one thing for certain about hemophilia, camp is a winning program for all.

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