Carnival Time!

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.”

Get your carnival masks ready!

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.

Abil loving pool time

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 Latins 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

Joint damage on a boy with hemophilia 
Wilson relaxes on the swings

Laurie suggests exercises to do
Playing a ball game

The winners!

Physical therapy session

¿Quien es?
Learning to do an infusion
Stan Javier of the Giants visits
Mecho and Laurie join in!
Coach Cuchito with Haydée

Air crutch-guitar?
Till next year!

 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, along with program director Tricia Sico. 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!)

Carnival time!

Walking In Their Shoes For A Day

The river ran through it
Sweltering heat, 100% humidity, long rides, sweat dripping
down our necks, back, arms, stepping gingerly through mud, grass, dirt… this
job ain’t glamorous or for the needy. Well, yes, it is for the needy; needy as
in being a child in poverty, motherless, earning a dollar a day, not having
enough to eat. These are the children with hemophilia we visited today outside
of Santo Domingo, in the Dominican Republic. It’s a day when you put your own
needs aside and realize just how shockingly removed we are from how most of the
world lives.
Luis Miguel and mother Dulce
Today was special for me, as I got to see this revelation
through the eyes of Tricia Sico, program manager for Save One Life, the
nonprofit I founded in 2000. This was her first country visit as a member of
Save One Life, and first time to the Dominican Republic. We first attended Camp
Yo Sí Puedo (Yes I Can!) in Lomas Linda, just outside of Santo Domingo, the
capital, for the past four days. I was going to blog about this amazing camp
tonight, but today readjusted our reality to the real reason we exist: to get
sponsorships for deserving children in desperate situations.
My day started with a shocking jolt at 8 am, after returning
from an hour-long run near the beach in the growing heat. From Tanzania, Dr.
James emailed me that Cuthbert, the little boy to whom I gave Tanzania’s first
home infusion, died of a GI bleed that could have been treated with factor
concentrate. We have been helping Tanzania for the past 6-7 years, and Cuthbert
was one of the first children with hemophilia I met there. His loss is
devastating.
The family enjoys watching videos from camp
on my iPhone
But we headed out to visit the living; the children whose
needs still must be met. Visiting the children in their homes, we see how much
they lack, in the simple things we expect: clean water, sanitation,
transportation, nutritious food, books, imagination, education. Add to that
hemophilia and their lives are a daily struggle to survive, like Cuthbert’s.
Today we visited five families in about six hours. I’ll only mention two for
now.
Haydee (far L) and Tricia (far right) with Luis Miquel’s family
At 10 am we rumbled along a crumbling, stony road in
Haydee’s SUV, built like a tank thankfully, to a cluster of wood shacks. The
farthest one housed the Ciriaco family. Huge plants fringed the walkways and
doors so that we had to duck sometimes. The house is made of wood slats, with
plenty of gaps in them to let sun shine in like laser beams in the morning, and
mosquitoes in at night. There are no screens, but the family does have
electricity as evidenced from the je
rry-rigged wires criss-crossing the shacks.
The family greeted us warmly; Luis Miguel, the son with hemophilia, sheepishly
tagged along, though he had just seen us at camp for four days! Why shy now?
His sister Nicole was not shy at all. Pretty in her beaded hair, she readily
hugged and snuggled. We all walked down to the river’s edge, where Luis
Miguel’s mother explained that the river rose in April of 2012 (11,000 impoverished
people had to relocate!) and completely flooded their meager home. They lost
most everything they had. I was told that the government came, helped for about
four days, and left. There’s no compensation, no one to sue, and certainly no
insurance. You are simply in the hands of fate.

 
Because the family was registered with Haydee’s
organization, the Fundación Apoyo al Hemofílico (FAHEM), they received food,
clothing and support. We snapped some pictures, interviewed the family a little
then had to move on to the next three families.
At the end of the day, we drove to Wilson’s house. We drove
far away from the city, on decent roads, until we started seeing less
businesses and homes, and more shacks, colorful laundry strung to dry,
overgrown plants and lots of chickens. Rural Dominican Republic. After asking
numerous people for some sketchy directions, we eventually came to the right
barrios and saw Wilson waiting by the side of the road. He hopped in,
exclaimed, “Hello Laureen!” (in English no less!) and then showed us how to
navigate the dirt roads to his home.
It’s as pretty as a home can get in rural poverty. Lime
green, little front porch. Inside, one giant room, divided with a cloth hung
from a line, to serve as a wall. Wilson is 10, and wants someday to be a lawyer.
He’s factor VIII deficient, but looks in good shape. Indeed at camp, he stole
our hearts with his charm and smile. His mother Evalisa was present, and little
by little, children and curious neighbors peered at us from their porches. Wilson
has a sponsor already, new, and I can’t wait to share photos with him. As we
chatted, little children ran about, holding hands, posing for a quick picture,
which I then showed them in playback to their great amusement. Giggling,
curious and trusting, I’m sure they haven’t seen our likes before!
Wilson and Laurie
I distributed some donated gifts: jewelry for the mom and
grandmother, toys for the kids, and an envelope with some money for the mother.
Wilson is a born businessman; he ran up to Vincente, a father of a child with
hemophilia who has volunteered with FAHEM for years and who is a lawyer, and
presented him with a beta fish…. in a whiskey bottle, sans whiskey. Vincente
paid him a few pesos, and off we went with our fish in a bottle. I suggested we
call him “Wilson,” and asked if the fish had hemophilia too.
Haydée, Vincente, Tricia and I stopped at a mall, and as we climbed out of the SUV,
Tricia, a true animal lover, felt compelled not to leave Wilson the Fish in the
car. We strolled through the mall with our whiskey bottle, the fish sloshing about inside, causing a few
security guards to turn their heads. We had a delicious lunch of chicken,
discussing all the kids we saw today, with Wilson the Fish in the center of the
table. Will the kids have a future? If we can get them sponsored, and continue to
get factor into the country. Well, we accomplished our goal to visit five
families today, which was exhausting, but we didn’t exactly walk in their shoes
for a day. It was only for a few hours, and it left us tired and contemplative.
We parted—Vincente with Wilson the Fish, and Tricia and I with tons of photos,
visual images burned in our memory, and much work ahead of us. If you want to sponsor one of our five kids visited today (and we can show you great photos!) please visit www.SaveOneLife.net
Coconut juice…
…For Tricia!

Hot Fun in the Summertime


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….

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 Cardoza, executive director of Save One Life (a child sponsprship program), Haydee de Garcia, president of FAHEM, Maria Espinal, nurse at the Robert Reid Cabral Hospital, and Zoraida Rosado, 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 devestating 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, ocaasionally 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, ony three rooms, shared with four dogs, cats and a hen and rooster in the back. Both boys need sponors, so if you are interested in helping this family, please go to www.SaveOneLifeInc.org 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!

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 exericses 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 exaggertaed 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 meregue 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 pavillion 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.

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 then 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 ano !

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