X-Boys: The Family by the Sea

Our 9+ hour journey from Santo Domingo



Day 4. Saturday, January 30, 2016 Dominican Republic


Despierto temprano. I awake early this day, at
5:30 am, in the near dark, a guest at Haydée’s house. Hayée is president of FAHEM, the hemophilia organization of the Dominican Republic, and a good friend and colleague. We’ve worked together for 18 years now. We share a light breakfast, eggs only, and a quick hola to housekeepers Isabel and Anna. Our team assembles on Haydée’s front patio: Fendi Bisono (a young man with hemophilia who is our main contact for Save One Life in the DR), Mecho, Haydée’s sister and treasurer of FAHEM, Eduardo, her husband, a successful architect,  Dra. Joanne Taveras, the adult hematologist and also our friend (oh let’s face it; everyone here is friends with everyone! When they say Mi casa es su casa they are serious), Haydée of course, Zoraida, me and our driver José. We have a large van, very comfortable. And off we go! This
would be a 5-hour drive one way to visit one family, a factor X deficient
family. Factor X deficiency is quite rare, but Dra. Joanne tells us that in
this section of the country, out past Barahona, almost to the Haitian border,
there are several families with it.
Cooking pot at rest stop

We navigate the
crowded streets of Santo Domingo and finally open up to the highway and
countryside. The further away we drive from the capital, the more we see the pretty
mountains that define this island. The sky is bluest blue, a cobalt canopy over
tender, green carpeted hills.

Dra. Joanne
passes the time by sharing all sorts of things, in Spanish, and I miss most of
the conversation. Then she and her fellow committee members do word games from
a phone app. It gets to be a lively competition. We take a break along the
route, and a small rest stop. It’s a little store front, stand alone, with sad plastic
chairs in the dirt out front for patrons, with chickens running about, and soup
cooking out back in a black cauldron over an open fire. I’m looking for a
bathroom out back, and all they have is an outhouse. And by that I mean
corrugated metal sheets to form a wall, wired together around a hole. Just as I
am about to pry open the alleged door, Eduardo, laughing, points to the little
cottage right next door, also a restaurant with a proper bathroom. Of course
none of even the proper bathrooms have soap, paper or driers. It’s always bring
your own.
Laurie Kelley by Caribbean Sea
On we go. About
three hours in we stop again, this time at a seaside road stand on a hill. The
view is breathtaking. Behind us, volcanic mountains that jut up from the
ground, draped in vibrant green. In front, the crystal blue Caribbean Sea, with
frothing waves, with water so beautiful and pure, the waves seem to melt diplomatically
into one another gently, rolling and crashing into the hillside on which we’re
all perched. A yellow dog runs to greet me and frantically paws my white pants,
dotting them with her prints. She senses correctly I’m the dog-lover of the
group and follows me about. I promise myself to being a box of Milkbones on all
future trips, in addition to factor and all the other goodies.
Typical outhouse

Several roosters
are imprisoned in little upside down wire cages, advertising their availability
as dinner. They cluck in confusion. In two huge rusty kettles, lunch is
cooking, the smoke trapped inside by palm leaves acting as tops. The family
that owns the roadside vendorship smiles reluctantly at us, perhaps sensing we
aren’t hungry enough to buy lunch yet. A bay stretches out from our vantage
point. Beyond that bay lives the family we will see, still an hour ride away.

The roads are great
in the DR.  Our ride, in a clean
and new van, is smooth and comfortable. We make one final stop at Dr. Joanne’s
mother’s holiday home, a wonderful place, like a tropical oasis! A natural waterfall
rushes into a man-made pool, fringed on all sides by stunningly towering palm
trees and moist flowering plants. José, our driver, cuts a branch from the tree
next to the van, which has a tangle of roots cascading down from its massive
branches and a substance oozes out. Caucho,
he says. Rubber.
Laurie Kelley with Adrian and mother

We finally reach
our destination, the neat little home of the Acosta family, who turn out to
greet us. Haydée hugs the mother, Jhoann, like a sister. Everyone is
introduced. This is the first time FAHEM has been out to visit the family. The
family is impressed and honored. And they know why we are here: to enroll the
two sons with hemophilia in Save One Life.

See the DR 2016 Gallery and all photos here.

The house, which
sits right on the roadside, is in good shape. It’s a saltbox: four walls, wood,
with pressed wood inside for dividers. The dividers are home-made and wobbly.
One room is the bedroom, one the entry room, where a small, lone, scarred table
stands, and one room the kitchen, mostly empty. They don’t own much: one bed,
one table, a washing machine that seems oddly out of place, a stove. Two small,
rickety chairs, and two heavy chairs that Eduardo teasingly calls thrones.
The Acosta Family

The boys are not
shy. Zoraida sets to work right away to interview them for Save One Life. She
takes out the enrollment forms, and standing, asks the boys a series of
questions. Both boys are small, and look to be about 8 or 9 years old, but in
fact are teens: 15 and 14. Abraham is 14, and in the 5th grade only.
He misses a lot of school due to bleeds, a common outcome of hemophilia in
developing countries. He loves math, and fishes in his spare time (later we
would see why). His brother Adrian is the wise guy. Charming smile, glib, he’s
15 and wants to one day be a doctor, because of all he has been through. Here
doctors are like gods; they determine the quality of life these children may
have. Adrian also likes to fish in his spare time.

Haydé de Garcia, president of FAHEM,
with sister Mehco, treasurer
Laurie Kelley enjoying fresh coconut

The HTC, as we
just experienced first hand, is five hours away. It would cost the family $60
to go to get treatment. The father, Andris, only earns $100 a month. Do the
math. Despite the nice home appearance on the outside, there’s no toilet or
bathroom, only an outhouse. There’s no fridge; there is electricity, again jerry-rigged
from the street. There’s no tub or shower or any way to bath, except the sea. Food
is prepared using charcoal outside. It’s a rustic life. There’s no TV, no video
games, no cell phones. You can imagine then what a difference $24 a month will
make; it will actually be $48 a month, almost half the father’s salary, if both
boys get sponsored.

Jhoann cuts out the coconut meat
Zoraida interviews the boys 

After the interviews,
we wait in the front of the house, and Andris grabs a bunch of green-husk
coconuts. Using a sharp machete, he lops the top off of each coconut and hands
us one. We sip the cool and refreshing coconut juice inside. Haydée and sister
Mecho sit on the slope in front of the house; Zoraida and I stand. When we
finish, Andris takes the machete and whacks each coconut again until it cracks
open. Then we peel out the coconut meat and eat it. I shock Andris by asking for
the machete. He reluctantly hands it over, looking at the group to see if I am
crazy. I want to slice my own open. After a few whacks it splits in two and
everyone laughs.

Caribbean feast!
When our home
visit is done, we travel on to another seaside stop, this one at a cove. There’s
a perfect sea in front of us, the color of the most exquisite jeweled turquoise.
It stops you dead in your tracks to gasp at it. Abraham climbs a huge piece of
driftwood while I photograph his daring. We stroll along a boardwalk to the
cover, where there are nice shops. Apparently families rent the shops and prepare
meals to sell. This is what Andris’s wife Jhoann does. We are ushered by the
ever-charming Adrian to mismatched plastic chairs and a long table in front of
the quiet cove. Instantly a young cat and two wary dogs hover about. Hip-hop
music blares from a radio near us where teens are hanging out and swimming. We have
drinks, wine, a sugary fruit called anom that I take a sudden addiction to, and
best of all, parrotfish, grilled. It is simply the best fish I have ever had. I
ignore the gaping-mouthed-head and yellowed eyes and dive right for the sides,
despite the numerous bones. About 12 fish are brought out and we devour them.
And so does my kitten, which I deftly feed under the table after straining each
mouthful to remove the slender bones.
Abraham shows off

Adrian serves us
as magnificently as any waiter in a five-star restaurant and the food could not
be better. After our feast and siesta, we must hit the road. We hug, pledge to
get sponsors, and meander back out from the lush cove, to the naked beach and
sun, for photos and good byes.

The five hour
trip back seemed to fly, as we had much to share and discuss. What a difference
we will make in the lives of this family; what a difference in our lives they
make to us.
See the DR 2016 Gallery and all photos here.
FAHEM, volunteers with Acosta Family

¡Qué Especial! Return to the Dominican Republic Part I

Haydée, Zoraida, Rosa, Glenn

It’s been over two years since I’ve been to the Dominican Republic, the charming Spanish-speaking country of 10 million on the island of Hispaniola. When I first arrived in 1998, this impoverished country was struggling, trying to boost tourism and recover from a devastating hurricane that destroyed the landscape. Hemophilia care was almost nonexistent. The changes since then have been amazing; the country is a humming, frantically active hive of business, trade and tourism. And this trip was truly special.

Dr. Rosa Nieves, Haydee de Garcia, Laurie Kelley,
Dr. Glenn Pierce

My good friend and colleague Dr. Glenn Pierce was coming along. Glenn is one of the most impressive people in hemophilia: twice former president of the National Hemophilia Foundation; former vice president of clinical research at Bayer; former person with hemophilia (had a liver transplant); and most recently senior vice president medical and scientific affairs at Biogen. Glenn was responsible for overseeing the clinical studies of Eloctate and Alprolix, and brought those two revolutionary products to market.

He left Biogen to get a knee replacement, and is now volunteering for the World Federation of Hemophilia. Glenn also sponsors children through Save One Life, the nonprofit child sponsorship program for children with hemophilia I founded.

He wanted to come along one of our Save One Life trips, because they are very different than most other hemophilia trips. We make it a point to get into people’s homes, ground zero. For Glenn, this would be the first time he would visit impoverished people with hemophilia in their home environment. I chose the DR for him, as it’s the country I know best. After all, it was my first developing country too, in 1998. I entered the inner city two-room home of a woman called Santa then, who had twins with hemophilia, and entered a new world forever. It was like time traveling, and the trip changed my life.

Laurie Kelley and Angel

Day 1 Wednesday January 27. I awake at the home of the president of the Fundación al Apoyo Hemofílico (FAHEM), which means the Hemophilia Help Foundation. Haydée is the mother of an adult son with hemophilia, and she founded FAHEM in 1995, two years before I met her. We’ve been friends and colleagues ever since. Over 19 years we’ve worked together to improve care for hemophilia on the DR.

Glenn meets with the Jimenez family

Haydée and I had breakfast: fresh fried eggs and mangú, the delicious national dish. We picked up Glenn and Zoraida Rosado, program director for Project SHARE, at the nearby Marriott Courtyard. Our first meeting was with Dra. Rosa Nieves, pediatric hematologist at the Robert Reid Cabral Hospital. Zoraida translated as Glenn and Rosa spoke about the new prolonged half-life products, how they work, and then about the Biogen 1 million IU donation in particular. Glenn stressed the importance of reporting on all the product usage; documentation is essential to be considered for more product donation. It was a good meeting as Glenn could see first hand how Biogen’s donation was being distributed and monitored.

See our full gallery of photos of this trip.

To Gabriel’s House

After this meeting we then drove out to see Andres and Angel Jimenez. They don’t live far away, but within 20 minutes outside of the throbbing streets of Santo Domingo everything changes. The jam-packed, bumper-to-bumper traffic lightens and turns into bumpy country roads, then dirt roads. This would be Glenn’s first visit ever to see an impoverished family in their home. I’ve been to this home 3 times now over the years.

Bed on a dirt floor; no screens, no latrine

Soon we were at the house, a wood slat structure with a steel corrugated roof. The boys came out to greet us, smiling shyly. I am able to converse a bit in Spanish now, so said hello to the boys and asked how they’d been. After a tour of the house—three rooms, including a kitchen with a huge propane tank for cooking, a bedroom with one bed, and the narrow, dark living room, altogether no bigger than 20’x’16’ with no screens or luxuries, Angel and Glenn looked for chickens out back. Glenn chatted with the boys, with Zoraida translating. Angel is almost walking normally now, following surgery on his knee. Everyone is amazed when we tell them Glenn used to have hemophilia (a liver transplant cured him). We had some laughs, hugs, and I left a gift bag with the mom, and inside un regalo muy especial–$50. She seemed most pleased by the plush poodle Beanie baby I gave her!

Gabriel and girlfriend; Laurie Kelley holding newborn

Afterwards, we headed to see Gabriel, a 20-year-old with hemophilia. He is propped on the back of a motorbike–no helmets of course–that whizzes along the dirt roads for 15 minutes, showing us the way to his house. Typical slat walls and steel roof. His mother Wanda is a live wire! Loud and animated, she commands attention when she walks in a room. After a brief visit, she pointed us down the road, to where her son Gabriel actually lives. We shuffled down the dirt road, passing several shacks, sun warmly toasting us, and approached Gabriel’s shack. Outside in the sunshine, a weakened puppy lay, same color as the dirt. It could only have been about a month old. I stooped to pet it, cradle his head; it looked up at me and leaned its head into my hand and licked my finger.  I saw fleas scuttling through its fur, and the ants on the ground crawled freely over it. It had sores on it, poor baby.

Inside, a half cement, half dirt floor spread before us. Corrugated steel sides and top, no bathroom or even latrine. They do have electricity by jerry-rigging some wires from outside. The barest of possessions. Gabriel lives here with his girlfriend, and their baby, only a month old, like the puppy. I was able to hold him. I recall Gabriel from FAHEM’s summer camp about seven years ago, as a young teen. His leg then had been so mangled from bleeds, he had to hop/skip to get around. His walking is better now, but it’s hard for him to hold any job. He was doing some house painting, he told us, but a bleed kept him down, and the owner fired him. Currently he is unemployed. His Save One Life funds mean so much to him. Gabriel told me he used his Save One Life money to put in the concrete floor.

Glenn meets FAHEM

After this visit, we walked back to the SUV and jumbled back to the city. That evening, at Haydée’s casa, the FAHEM board members all came over. Everyone sat outside on the patio in the humid air: Fendi, Alfonso, Jonathan, Guillermo and Brahyan, Wicho, Mecho, and Dras. Joanne and Rosa. These men were all the boys I had first met in 1999, at our first camp, when they were only kids. Now they are mature adults, and future leaders. Haydée and her team are doing an excellent job at grooming them.

Laurie Kelley meets José Luis!

Glenn was able to chat with everyone, asking questions. Each person introduced themselves and shared something about their background, their struggles. They included how FAHEM turned their lives around.  Everyone appreciated Glenn’s visit; we impressed on them that Glenn is an important person in the world hemophilia scene, and he chose to come to the DR to get a glimpse of how people actually live and struggle with hemophilia in developing countries. Part of the reason we chose the DR is that there is such a good team here: doctors, parents, patients, industry—everyone works together. It’s not like that in all countries and lack of teamwork hinder growth, progress and care.

First hospital in Americas, 1500s

Day 2 Thursday January 28. This was our free day, to tour Santo Domingo, the capital city. The Colonial section downtown is so crowded now you can hardly park your car anywhere. We saw all the usual sights, buildings dating back to the 1500s, when the Spaniards were here. We saw the first street in the Americas, the first university, the first hospital in the New World. This is where Christopher Columbus landed in 1492, and where the conquest of the Americas began. It’s history is rich.

The food here is fabulous. I’m not a foodie, and could honestly survive on power bars, but here… fresh, abundant, delicious fruit and fish. The flavors are amazing. We took Glenn to a ritzy restaurant for lunch, and then three hours later, off to Boca Chica for dinner! The restaurant in Boca Chica is actually built on a pier, over the ocean, so you are surrounded by the waves as you eat. We all relaxed, chatted, enjoyed being in a foreign country, under the stars, surrounded by candles, hearing music, the roar of the sea against the beach. It was a lovely way to end the night.

Haydée lectures families

Day 3 Friday January 29.  This morning we stopped by the HTC at the hospital, where many families with hemophilia were gathered. I knew so many of the kids: Orlando, Socrates, Jhoan, Darling, Emmanuel. We exchanged hugs and kisses after a two year separation. Maria, Santa’s mother, came also. Santa now lives in Santiago; she was the first person in a developing country whose home I went into, in 1998. I still recall how sad her little home was, and she was putting away Christmas decorations, just a cheap plastic garland, that was all.  I slipped the grandmother $40, which was all I had in cash.

Haydée lectured the families on various things concerning hemophilia, but especially the importance of coming to the HTC when they have a bleed. She rightly pointed out that many do not come, choosing to bleed, thinking that there is no factor. But now there is factor! The Biogen donation will last some time, and they should come and get treatment.

The HTC and all the hemophilia families meet Glenn

Glenn was introduced and Zoraida translated as he spoke. He mentioned the Biogen donation, how he was a part of that product development, and how important it was for everyone to report on the donation usage, so they would be eligible to get more.

Afterwards, photos, good byes, and we took Glenn to the airport to get his flight home. Haydée and I chose to relax later at her club by the ocean to have lunch. We were the only ones there. The Caribbean Sea was a sparkling jewel, the day warm. We rested on plastic chairs, admiring the peace and the serene waves. We shared a grilled parrotfish, which I’ve never eaten. It was a dark orange color, complete with head and eyes. It bore a row of very sharp teeth; it’s expression, popped-open-mouthed, looked like it was at once shocked and demeaned by being fried and eaten. Best fish I ever ate.

See our full gallery of photos of this trip.

Part 2 next week! We go off on a 9 hour odyssey to meet one family. 


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!

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