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!
|Rithy, Martha, Sithan|
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.
|Cow in a rice paddy field; rice is the major export|
|Martha interviews Mien family|
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.
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.
|Sonee, age 6. hemophilia A|
|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.
|Loving those Beanie Babies!|
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!
|Showing Sonee how to use crayons|
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.
|Panuuk steals the show!|
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.
|En route to next family|
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.
|A family in need of help|
To sponsor a child with hemophilia in Cambodia, visit www.SaveOneLife.net
Next Sunday: A Visit to the Killing Fields.