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 timeJoint damage on a boy with hemophilia
Wilson relaxes on the swings
Laurie suggests exercises to do
The winners!
Learning to do an infusionStan Javier of the Giants visitsMecho and Laurie join in!
Blood, sweat and tears literally flowed at the Dominican “¡Yo Si Puedo!” summer camp in Lomas Linda, Dominican Republic this past week. Blood? Because the 40 children and teens attending all have hemophilia, and when you are exited, attending what may be the brightest spot in your year, running, playing, dancing—oh my, can the Dominicans dance!—and you are never on prophylaxis because there is so little factor available, then you are naturally going to bleed.
No problemo. The good news is that we had plenty of factor for camp, thanks to a generous donation. And you wouldn’t believe how these kids played, knowing they had factor to back them up. With a theme of the “Wild West,” our little cowboys were pretty rowdy!
This is the 11th annual Dominican camp, called “Yes, I Can!” in English. A little over twelve years ago, when I first arrived here, the DR had next to nothing for hemophilia care. No factor, not even donations, a poorly run hemophilia national organization—in name only—and a patient registry of less than 50, if even that. Patients were shut out of participating in their own organization, until one woman and her colleagues decided to shake up the system and return power to the parents. Haydee de Garcia and friends succeeded, and the DR today has a government that buys factor, a patient registry of over 260, regular meetings and events, a strong new organization that is patient-centered, and best of all, a fantastic camp.
Sweat? The humidity hits you like a sledgehammer on this beautiful tropical island nation. My feet swelled within a few hours and I sweated constantly for the next four days. Camp is about 40 minutes outside the capital Santo Domingo, in the rolling hilled countryside. The stunning facility where we hold the camp has stately white houses for dorms, a thatched-roof dining area, a big in ground pool, and no hot water! That’s fine because you look forward to the chilled water to cool you down and wash away the constant perspiration. Three showers a day and back on go the damp clothes, only to be soaked again within an hour in the dripping air.
The acclimated Dominican kids never seem to sweat, though. I watched the in awe as they rolled out of bed at 7 each morning, formed a circle at 7:30 am and did their group calisthenics with “Cuchito” the coach, and then paraded into the outdoor dining area for a hot breakfast. Then there were classes about hemophilia, story times, pool times, a rowdy time with inflatable bouncing castles and jumbo slides and a very special visit yesterday to a rodeo—the first one in the DR! As always, camp ended with a wonderful talent show, including skits about hemophilia, and we were all dancing the merengue when the clock struck midnight.
We had probably the best camp since 1999, when it was founded by Haydee and the Fundacion Apoyo al Hemofilico (FAHEM). Then, it was rustic and without amenities. None of us knew how to run a camp, but still we had a great experience and created fond memories. Fast forward and now we have a world-class camp, and the little boys who attended the first camp in 1999 are now counselors, young men who model everything from how to have manners, to how to be part of a team, how to settle disputes, how to be patient and disciplined, and how to have fun safely.
Tears? That was a surprise for me. I’ve been watching these boys for 11 years, and as a mother, am bursting with pride for the initial campers and the men they have become. Brahian, Javier, Alphonso, Luis, Dámaso, José G., Isaiah, Henry, Carlos and José Luis—what amazing and beautiful young men with hemophilia they all are. When we sat down yesterday morning for a rap session about who they are, what their role is in the future of the organization, leadership, and the importance of them taking on even more leadership in preparation for the day when current leaders are gone, the boys expressed their thoughts and feelings.
It started as a rational discussion about leadership and camp, but then it was as if the past 11 years welled up like a swelling ocean wave, carrying with it all the feelings of little boys who left their mothers for the first time in 1999 to young men who have shouldered silently more pain than most of us know in a lifetime. In giving us, the adults, thanks for what we have done for them—personal sacrifices, long nights of planning, days and weeks of organizing, late night visits to the hospitals–tears began to flow when they realized what their lives may have been like had there been no Haydée, no Mecho, no Dr. Rosa or Dr. Joanne, no FAHEM, no camp. And when one wept spontaneously, several others quietly wept, to release all the common feelings of a decade and in gratitude that their futures have been secured. As one young man said, “These are tears, not from sadness, but from joy.”
Many of these boys and young men come from homes where there are few material possessions, sometimes even no plumbing. They live in houses, make-shift sheds, or cramped and hot urban rented rooms. Camp is so much more than a fun time for them. It’s a celebration of life, a communion of children and young adults who share a common pain, and a foundation for the future. It gives them hope that things will change. Blood, sweat and tears? Bring them on: the blood and sweat you cannot avoid at a hemophilia camp in the tropics. The tears are a delicate leaking of innermost feelings of gratitude– for being alive and for being loved.
This camp is one of the greatest things I have ever been involved with, and nothing makes me happier than to see the boys together, as friends, as mentors, sharing life and memories, and preparing to raise the next generation. I am here till Wednesday, when I leave on a 8 hour bus trip to Haiti–stay tuned!
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.
What could be more fun than attending a camp with 50 boys with hemophilia in the summer heat with activities, great food, camaraderie, a talent show, carnival games, swimming pool and meeting a world class celebrity?
Doing it in the Dominican Republic, a tropical paradise.
It’s the 10th anniversary of a remarkable camp, “Yo si pudeo!—Camp “Yes, I Can!” I would dub this one of the best, if not the best, camps for hemophilia in the developing world. And I know what it has taken to make it so as I was here for the very first camp in 1999.
Back then, as I told the staff today, I came to the DR give direction and advice. Things like: you need volunteers. You need to raise money. You need to quarter the medical area, preferably out of the dorms. You need Plan B for when it pours rain for three solid days. You need name tags, a list of each camper, and above all, you need factor. And factor can’t be stored with the raw meat.
It was a long learning process, but with each camp, the experience got better and better. I was delighted in 2005 to attend my fourth camp and saw not only a medical room, but also one under lock and key, clean and organized, with fresh flowers in a vase. Not only did the kids have nametags, but they had groups, which were named, and each group assigned a teen counselor. The counselors were the teens who grew up in camp. Amazing!
Ten years of camp came together seamlessly to create an awe-inspiring four days. The children were dropped off by family members on Thursday at the Robert Reid Memorial Hospital in Santo Domingo, the capital. I eagerly greeted the children I had come over 10 years to know and love, and met some new ones. Once assembled, they were hustled off to a chartered bus for the quick 25 minute ride to Lomas Linda, a lovely, lush town nestle in the hills. This was an exceptional venue—a private function house, with a huge wrap-around veranda on which were oversized chairs and hammocks, enticing visitors to relax. Parrots in cages, a pool table, gorgeous tropical flowers, I felt like I was back in colonial times, at a governor’s house in some far reaches of the world. Except, of course, for 50 Dominican kids with hemophilia having the time of their lives.
All the children were assigned to a group, distinguished by a color, and had color bands around their wrists so there was never a doubt which group they belonged to. And each child had a nametag, so that we could all learn one another’s names.
The day begins at 7 am sharp with stretching on the lawn, headed by “Cuchito,” the coach and motivational man who showers the boys with love and discipline, and lots of fun. “Consado? (Tired?)” he shouts; “No!” the boys yell back while marching. “Alegre? (Happy?)” he shouts; “Si! (Yes!)” they reply. For 30 minutes they march, stretch, jump and loosen up, then eat a healthful breakfast. After that, there is pool, arts and crafts, rap sessions, educational seminars or rest times. The older boys look after the younger; and everyone is expected to participate, pitch in, and be the best teammate possible. It’s a successful recipe: the kids are attentive, behaved, active and happy.
One big surprise came when the kids were assembled outside the compound, eventually allowed back in through a series of “obstacles” as a group, with each obstacle an educational game about hemophilia at a table, staffed by maybe Dr. Rosa, their pediatric hematologist, or Dr. Joanne, the adult hematologist. When they passed through all the obstacles, they entered the main lawn of the compound, where there was a carnival! The center of attention was a huge, inflated slide which could and did hold up to 20 boys at one time, sliding, diving through tubes, climbing over inflated bars and then emerging at the end through two holes. No one seemed to notice when the clouds opened up and poured rain on everyone for about 20 minutes. Everyone beamed sunshine from within.
Many of the boys suffer permanent joint damage, and though young, walk with disfigured ankles, knees, and hips. I see Gabriel, who has a dazzling smile, trying to keep up with his friends by hopping-running-hopping-skipping-running to accommodate his crooked legs. He cannot be more than 15. Others have bleeds, and need to be reminded to stop playing and visit the medical ward. Though factor is a luxury here, being together with their hemophilic brothers is an even greater luxury, and one they don’t want to miss.
Today we came back to Santo Domingo, with stronger bonds and happier children. I hope to write more about the experience because so many wonderful things happened, and because it was our tenth anniversary.
I ended the day telling the staff that I used to come to the DR to give them advice on how to run the camp. Now I come to learn from them how to run a camp, and how to raise children with hemophilia when there are few luxuries, little medicine and no resources. Well, not no resources; the DR is rich in human resources, where creativity, hard work and dedication is changing the lives of so many children.
Check in again soon to read more and see the kids with their celebrity hero….
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.
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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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.
