Cambodian Hemophilia Association

Cambodia: From the Killing Fields to a Land of Hope

Laurie in a tuk tuk
After breakfast on Saturday October 4, I went with the “tuk tuk” driver to pick up Sithan. The tuk tuks are autorickshaws—motorcycles with rickshaws attached to them. Sithan is the 33-year-old president of the Cambodian Hemophilia Association (CHA), who has hemophilia. He was to join me today for a tour. When we got to his home, he met us at the gate not looking well. Pale, tired… he was bleeding from a serious dental extraction last week and it was really bothering him. We brought factor for him on this trip, and he had already used several vials, but now
needed rest.
The stupa 
So I went alone to the Choeung Ek Memorial, the “Killing Fields,” so dubbed by Dith Pran, theCambodian journalist who was portrayed in the movie The Killing Fields. This would be my second visit to a genocide
site (my first was in Rwanda earlier this year).
The tuk tuk ride was insanely wild, like being on a run away roller coaster. We jostled through
the streets of Phnom Penh, dodging cars, motorbikes and other tuk tuks. The tuk
tuk is open-sided, with a roof. The wind whipped my hair; the air is
gritty with pollution. I can’t help but think I’m in a little cart at a
low-budget Asian Disneyworld, on Mr. Toad’s Wild Ride. Motorbikes, carrying
young ladies with pink helmets, young men with intense looks wearing surgical
masks, even children—some sandwiched between the father driver and mother
passenger, sound asleep—swarm the cars and tuk tuks like ambitious bees.
Contributing to sensory overload are the odors: diesel fuel, thick, acrid
exhaust from vehicles; sudden sour smell of rotting garbage as we cross a bridge;
a surprise charcoal smell laced with delicious scent of roasted beef.
Mass grave of 450

My driver took back roads and alleys, some of which were nothing but huge mud puddles from the
rain. I actually started feeling really queasy and nauseated. I was glad that Sithan stayed home!
We arrived after 40 minutes and the driver sat in the lunch area while I paid the $6 admission
and picked up a headset and started the tour. Overhead was a brilliant blue sky
with a glaring sun basking us in 90° sunshine. Directly in front of me was the
huge stupa, or Buddhist temple. The soothing and paternal voice on the headset said to go there last. The narrator himself survived the vicious Pol Pot regime and felt honored to be able to
narrate what happened. There were many killing fields throughout Cambodia but
this was one of the most famous. There wasn’t much to see; some signs informed
us of what once stood there—the area where trucks would disgorge prisoners
(prisoners! They were men, women and children, average citizens), the place
where prisoners would be registered.
But there were graves of hundreds of victims, vaguely protected by a
small stockade around each mass grave. The first grave contained the remains of
450 victims; a sign told us that each time it rains, more remnants are
unearthed. It is not unusual to find human teeth or small bones still, after
all these decades. Clothing was displayed, and the bones of victims. As I
listened to my headset, a one-legged, dirty man stood by a tree; we were separated
by a wire fence, that’s all. He was begging, begging in his own country. I
handed him a $5 and he asked, “America?” And I nodded and smiled.
The Killing Tree
The Pol Pot regime
and his Khmer Rouge fighters took control of the country from 1975-1979, in the
attempt to create a Communist utopia. Pol Pot believed it was possible for
Cambodia to be self-sufficient, and in the process, dragged his country back to
the Stone Age, where everyone had to work communal farms, with no equipment or
machinery. All foreigners had to leave. Next came the purge of any
intellectuals: doctors, teachers, lawyers. Anyone educated was at risk of being
tortured and killed, and this was done in crude and primitive ways. Eventually
victims were brought to the Killing Fields, where they were murdered. Whole
families were wiped out. These are sites where unspeakable atrocities took
place. I reflected that from 1975-1979, the years I was in college, enjoying
life, going to dances, studying, eating, having fun… an entire generation in
Cambodia was being wiped out. While I slept peacefully in my bed each night, Cambodian
children were starving, dying, mothers and families were being tortured. They
were living in hell, imposed on them by their own rulers.

Stockade fence with prayer ties

I approached one
mournful monument, a tree, where babies were bashed to kill them, then tossed
into an open grave. The tree was decorated with little wrist ties of many
colors (you receive the ties when you make an offering at a Buddhist temple).
They looked like little yarn butterflies fluttering in the wind. The graves were
simple, marked with hand-carved signs. The bones, like those in Rwanda, were
out in the open. Nearby, a huge tree stood, a survivor, a mute witness to the
atrocities from the past. On it the Khmer Rouge rigged up loud speakers, over
which was played constant, loud propaganda from the screeching voices of the uneducated soldiers. The loudspeakers also covered up the screams of victims.

Eventually I came to the stupa. It is steady, solid, soaring… and stacked with skulls. Perched on the corners of each section are stone mythical creatures in Hindu religion: Garuda,
the winged birdman who carries Lord Vishnu. And Naga, a dragon/snake that is Garuda’s enemy. That they appear together here denotes peace. After removing my shoes respectfully, I climbed the marble stairs, which are strangely cool, even in the suffocating heat.
Facing me is a clear, acrylic wall, encasing thousands of skulls, bleached
white, stacked neatly. Each skull has been analyzed and marked with a color dot to denote its sex and how the victim was killed. They were killed in many
different ways but all primitive: cleaning rod was a favorite method. You can
look at eye level into these skulls, which were once peaceful, innocent people,
mothers and fathers, young men and women. You feel like talking to them,
apologizing, wishing they could have a chance at life, a normal life. Buddhists
believe in reincarnation, and looking at the bashed and pierced skulls, you
want to believe this is true for their peace. So few of us ever get to see a human
skull. When you gaze at one, emotions aside, you marvel at its architecture:
the nasal passage ways are intricate and refined, thin sheathes that capture
minute scents; the occipital bones are strong and full of character, creating
almost a surprised look. You’re reminded that each of us has one of these hollow-eyed,
whitened shells within us too, and, Caucasian or Khmer, we all look pretty much
the same once the skin is gone.
It started to downpour as I left, as the heavens opened and “threw down their spears.” (well,
it was stars in the poem) The driver unfolded the tuk tuk’s side canvas to
protect me from the rain, but with him driving, and other motorbikes and tuk
tuks throwing up water and mud, it was pretty messy, and yet refreshing as the
temperature has been a steady and muggy 90°.
Monday October 6, 2014
We’re in Siem Reap today, where the ancient temples of Angkor Wat are, a World Heritage site (though better known in the west for being the location of the filming of “Tomb Raider”). After a great breakfast in the hotel, where they cater to your every need, Martha, Sithan and I headed in a tuk tuk to the Angkor Children’s Hospital nearby. Already 20 children and their
families were waiting for us. Cambodians are a truly beautiful people. I loved seeing the little children’s faces turned up at me, mixing shyness with
curiosity.
Martha gave a presentation about
Save One Life to the audience while Sithan translated. It was a long day in some ways:
sitting in a hot meeting room, tightly surrounded by incredibly impoverished, often illiterate, families whose children have bleeding disorders. We were only going to interview three families, but instead, we decided on the spot to interview them
all! So sitting in chairs that are like elementary school chairs, with a small tabletop attached, we divided up the families. Soreng, the social worker, took
some; Martha and Sithan took some; and the Dr. Sing Heng and I interviewed some. It took about two full hours, maybe more.
I also photographed them all. I handed out the gift bags, which were an
enormous hit—each child received an authentic Beanie Baby and some toiletries
and candy. The kids were adorable and mischievous, giggling and casting glances
at me, some brazenly looking and smiling. We connected with almost all.
As we interviewed, sweat constantly slid down our backs, dripped off our hair, but what an honor to meet so many! The local volunteers here did a great job mobilizing the families. The families were given meals in Styrofoam boxes, for which we paid. The hospital would kindly cover
their transportation costs.
The stories are sad; some heart-breaking. One boy with hemophilia, about 20, has mental issues; his
mother is partially paralyzed. They are very poor and have such hard lives. All these children will be available for sponsorship through Save One Life.
Cambodian Hemophilia Society (in Siem Reap), with Martha and Laurie
It was tender, and heart breaking.
It’s easy to feel overwhelmed, almost defeated when facing the crushing truth
of poverty and hemophilia. Will we ever make a difference? And then, I think, if
we were not here, who would help them? Just $22 a month can truly change their
lives. We’ve seen it happen in other counties, and we are going to see it happen
in Cambodia.
(Do you see a child you want to sponsor? Visit saveonelife.net)
Great Book I Just Read
Survival in the Killing Fields [Kindle]
Haing S. Ngor
Ngor is famous for portraying the journalist Dith Pran, the subject of the 1984 movie The Killing
Fields, which won Best Picture, and earned Ngor, who was not an actor, Best
Supporting Actor. Ngor himself escaped the Killing Fields, but spent four years
working hard labor and starving on a communal farm. He had to hide his
profession as a doctor or he would have been killed. He was tortured several
times, brutally, and endured chronic starvation and deprivation. The story is
an easy read technically, but difficult emotionally. He reveals all that he
experiences from the point of view of the victim; he didn’t understand what was
happening, never heard of Pol Pot, and could only focus on survival. Eventually
he escapes in the last throes of the regime, when the North Vietnamese invaded,
and enters Thailand. He makes his way to the US, a broken man, angry, but still
surviving. Though he became a Hollywood overnight sensation, his life still did not go
easy. This should be required reading for high school students, and any fan of
history and survival. Four/five stars.

Cambodia: Ancient Country, New Partner

When Save One Life executive director Martha Hopewell and I arrived at
midnight after traveling three flights in 30 hours, we sailed through customs in Phnom Penh, capital of Cambodia, even though I am carrying factor to donate; it’s always a good day when all our bags show up. Sithan, a 33 year old with hemophilia A, and president of the Cambodian Hemophilia Association (CHA)  and his wife were waiting to greet us, with jasmine wreaths.
Next day, Wednesday, at 4 pm, Sithan and his wife arrived at our boutique hotel, which sits on the Mekong River. We sat in the lovely restaurant while Martha reviewed all the Save One Life material with him. I took some photos, and then we all had dinner. The food here is
great! We plan our week which will include visits to the hospitals, families, and The Killing Fields.
Cambodia is a country that has suffered. Primarily Buddhist, and peaceful, it has nonetheless endured some of the worst horrors mankind has to offer. Bombed incessantly from 1970-73 by the US, in an attempt to destroy the Ho Chi Minh trail which supplied Communist North Vietnam, then torn apart by its own leaders as the evil Pol Pot regime took over from 1975-1979. About 3 million people died from starvation, executions and torture as Pol Pot attempted to create a self-sufficient, Communist utopia. Instead, it was hell on earth. That era wiped out a generation, and in speaking with families this week, we would witness how family histories just disappeared.
And it still suffers, from untreated hemophilia. Our goal will be to assess Cambodia for Save One Life, and then enroll our very first children, offering hope to some families in poverty here.
Laurie with random kids in front of Royal Palace

Thursday October 2, 2014
Sithan with Dr. Sophal
Today we went to the pediatric hospital to visit Dr. Sophal Chean, the chief hematologist. It’s a small hospital and our visit was short but productive. The day was bright and hot, and slightly humid. Sithan and the treasurer of CHA, Chanthearithy (“Rithy”) Run accompanied us. The wards were filled with children: beautiful, almond-eyed children suffering from various blood diseases, attended to lovingly by their mothers. I had brought some Beanie Babies with me and shared them, much to the delight of the kids. It was a good meeting and I learned more about hemophilia in Cambodia. To
think that since 2008 only the WFH and us, Project SHARE, have supplied them
with factor! These are the moments when I realize what a far-reaching impact we
have had—and yet realize we need to work harder to help. While there, Sr. Sophal only had about 30 boxes of FIX in the fridge, and that he said would
last him two years!
We learned: most patients are still being treated with fresh frozen plasma, and yet the blood donation culture is not good; so they use donor-designated plasma. The public hospital does charge a small fee for any service, which is a burden to families. In 2014 they initiated inhibitor testing. Cost of factor?  500 IU costs $300… no products are registered. No one can afford to buy products. There are 91 registered patients of all bleeding disorders. With a population of 15 million, there should be about 1,500 with hemophilia; the oldest known person with hemophilia is about 40.
Laurie with Lyuthara
One patient attended, Lyuthara, about age 24; he was quiet, thin,
with enlarged knees. He has hemophilia A. We gave Dr. Sophal our gifts of
CryoCuffs and factor VIII. He immediately shared some with Sithan, who was nursing a postsurgical wound in his mouth. He had had his wisdom teeth extracted last week, and one required a stitch.
Friday, October 3. This was a lovely day, because we were doing home visits, my favorite activity when I visit a country. (well, rafting and mountain climbing rank high too!). The weather remained cooperative: sunny, but very hot, about 90°, with some humidity. We had breakfast in the nice
dining room, which was decorated tastefully in Cambodian fashion: dark wood, soft cushions, carved statues of Ganesha,  Buddha, and elephants. But it was playing some awful and loud music: pop and show tunes. We had to
ask them to turn it down so we could even talk.

Sonee, age 6. hemophilia A
After breakfast we headed out to see families. The first one, Mien, lives on the outskirts of
Phonm Penh. (Phnom means hill). We took our very lovely hired van, with AC and even a
TV screen, avoiding the morning air, thick with exhaust, dirt and grit. Many
people on motorbikes use surgical masks to protect themselves. While the
traffic is moderately heavy compared to other countries, it moves quickly and
deftly. We passed the stunning Royal Palace on our right as we took off.
Down some dirt
roads, out past fields, farms and rice paddies, and about an hour later  we arrive at a quiet dirt street. The house is up on posts, to protect it from flooding. The family is gathered below, under the house, quivering with excitement to see
us. Chickens strut about, oblivious to us. All the children, cousins, are huddled together, waiting. We make our greetings: there are so many
people, I am not sure who to look at first. Sithan introduces us: mother,
grandmothers, children. The culture here, as in many developing countries, is
for families to live together. So it’s not uncommon for families to live under
one roof, or in a compound. This is a compound. And these are loved children: they
are happy, giggly, a little shy of the white strangers. Two boys with
hemophilia: Sonee, born 9/12/08 (who wasn’t feeling well), and Sokheang, age 4,
who has a bit more meat on him, not in school yet.
Ly Heang, age 4, hemophilia A
This was an opportunity for Martha to teach Sithan how to perform the initial application for a family
to join Save One Life. She asked the questions, noting the answers, and sharing her thought process with Sithan: the child’s
name, birth date, siblings, family income, health status, bleeding episodes. It
is actually a lot of work, but it gives the hemophilia association members time
and chance to get to know each individual family who is part of their
association. Home visits are so important! You can see the living conditions,
meet family members, assess needs. Sometimes we uncover problems you would
never see by just a family visit to the clinic: special needs like want of a
wheelchair, a house with no toilet or electricity, or alcoholism in the family.
Fortunately, none of these problems exist here. The family is large, unified, healthy and happy. And poor: though they live in a “compound,” the combined family income is only
$150 a month. The mother works in a factory, the father is a driver. A humorous moment occurred when Martha ran down her list: is there electricity? Check. Bathroom? Outhouse, check. Own home? Check. Running water? No, well water. Check. Fridge?
The women all looked at each other, then burst out laughing. Probably like asking one of us if we have our own private jet!
While Martha asked questions, I decided to give the children their gifts. The two brothers with hemophilia got red Save One Life bags, with special gifts inside. The others got Beanie Babies, and they were enchanted! They went from displaying a cool but polite demeanor, to gabby, giggling and connected. We smiled, made eye contact and I reached out to tickle one playfully. All children understand games. When I duck behind a post, like
peek-a-boo, they immediately seek me out and then act surprised or scared when they see me. They love the stuffed animals.
Sonee wasn’t feeling well. He had crayons in his bag, but I’m not sure he has ever used crayons before. He didn’t seem to know what to do with them. So I motioned for him to come here. Noting he had on a Mickey Mouse sweatshirt, I showed him how to draw Mickey. No smiles. No smiles for the camera either; just not a good day for him.
Cousin Panuuk stole the show. What bright eyes, inquisitive personality, and mischievous smile! He
captivated everyone. A natural in front of the camera, I confess I took many pictures of him, to catch all his varied expressions. All the children were exceptionally beautiful.
The mother was so grateful to us for our visit. I observed her very nice clothes, probably her best, wanting to make the best possible impression. As we said our good byes she hugged me.
After this family we had lunch, and then went to see another at 2 pm, not too far away. This
visit was quite different. The family of eight, two parents and six kids, live
in a three-room house right in the city, on an extremely busy street. One room is a small storefront—basically a counter in front of a small room with various supplies stacked up. Out front,
a small refrigerated stand that serves ice cream and cold drinks.  Only the mother and son were present. The boy, name unknown yet to me, was sitting on the small cot, one leg tucked under him,
his knee swollen; he was pale, remarkably thin, without musculature, and
sullen. The mother, age 49, was hyper and stressed. She sat on the floor next
to her son, and talked incessantly, while her son stared down at and played
with his overgrown fingernails. I’ve been in dozens of homes of the poor, but
this one really made me look hard. They are not as poor as most: there are two
cameras on tripods, so they own a side-business of taking photos. She has a
good inventory in the store of food, toiletries, batteries. But her house— what
a disheveled mess. Things stacked helter-skelter, dishes dirty. No place to
wash, or even cook. I don’t think she does cook. Many homes are dirty due to the
nature of where people live and lack of access to water, but most are organized.
The lack of space means people get creative with being organized. This was just
a random mess. It bothered Martha and me. And the boy, age 15, but looking like an eight year old, is
malnourished and weak. He isn’t attending school yet this year because he can’t walk on one
leg. He doesn’t want to be taunted. Later he added that there are five floors
to his school. PT is $10 a session. I told Sithan this is where he can make a
big difference as a “big brother” and mentor. This child needs physiotherapy,
and more than that, an attitude change. When we asked him questions, he looked
annoyed, lifted his head, and then dropped it.
Usually families put on the their best foot forward when they know they have foreign visitors arriving, who are offering them help. Still, we decided we will enroll him, as it will be a chance for CHA to monitor him,
and for him to offer something to his family, besides being a burden. We compared notes on the ride back, and Sithan said, The mother is stressed and the child is depressed. I know; I have been depressed. But even in families were the child has suffered immeasurable, I have always seen some glimmer of hope. Here, there needs to be a glimmer. Perhaps a sponsorship will show them that there is hope, and that they are cared for.
To sponsor a child with hemophilia in Cambodia, visit www.SaveOneLife.net
Next Sunday: A Visit to the Killing Fields.
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