Camp

Carnival Time!

Laurie Kelley July 15, 2013
Laurie Kelley reunited with the DR boys

I spent 10 days in the Dominican Republic recently, and the highlight was our annual camp for about 40 boys with hemophilia. If you read my blog from last week, you will see that many of our boys live in extreme poverty. As founder Haydée de Garcia, president of FAHEM, the national hemophilia organization said, “Camp for them is like going to Disney World for an American child with hemophilia.”

Camp–no matter how grand (like Paul Newman’s camps) or small–like ours–is magical for any child but especially a child with hemophilia. Here, they get to be a regular kid, able to do so many things normally not allowed or even conceivable. Our boys played “baseball,” using their bare hands and a rubber ball, but with what competitiveness! (Baseball is a national passion here) They made masks for carnival, the theme of the camp. Swam in a huge pool, did competitive ball games, had rap sessions with a counselor, watched movies, and best of all… got factor. The DR bought no factor last year, at all. What they had came from donations, like from Project SHARE, our humanitarian program. All the factor at camp this year was donated. And without factor, there would be no camp.

Get your carnival masks ready!

We had a few surprises, like a visit from baseball great Stan Javier, formerly of the Mariners and Giants. And on the last day, Carnival! After breakfast, we heard horns blowing, percussion, and across the lawn came a carnival crew, and everyone got in on the action. No one can party like the Latinos can!

I’ve watched this camp grow from an idea on paper, to a first attempt in 1999 to now a world class camp. It’s a model for anyone running a camp for kids with hemophilia in developing countries. My boys, who were ages 8 and up in 1999, are now in their twenties and are counselors–and tower over me! They love that I return to camp when I can, and I in turn love to be there, and love them. They teach me all the time about reliance, appreciation and giving back. Some of them were in constant pain at camp this year, discernible only by a serious look on their faces when they thought no one was looking. They do without: ice applied to a joint instead of an infusion of factor. But nothing dims their joy. We should all live so in the moment, with such joy.

(Thanks to Save One Life for a donation to help meet camp expenses! Many of our beneficiaries attended camp. If you want to help with camps like this,consider making a donation to our camp campaign going on now at www.saveonelife.net  Gracias!)

Abil loving pool time
Joint damage on a boy with hemophilia 

Wilson relaxes on the swings
Laurie suggests exercises to do

The winners!
Learning to do an infusion
Stan Javier of the Giants visits
Mecho and Laurie join in!

Till next year!
¿Quien es?

Inhibitor Camp This April

Laurie Kelley January 9, 2012

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.

Mission: Dominican Republic

Laurie Kelley April 9, 2008


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!

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