Wednesday, September 2, 2009

A House for the Tran Family


Tran Minh Tuan has cerebral palsy, a deformed rib cage and withered limbs because his grandfather was exposed to Agent Orange during the Vietnam War. His uncle is also affected, but not his father. Such is the randomness of this affliction.
Tuan and his two healthy siblings live with their mom and dad in a shack made of bamboo and palm thatch with a dirt floor that gets muddy when it rains. Last rainy season, the shack they were living in collapsed around them. Their only furniture is a bed, a hammock, and a little plastic stool that holds their small electric fan. Tuan lives in this space 24/7 while his dad is out seeking work as a day laborer on construction sites (when available) at about $3 a day. As you can see, Tuan smiles a lot when company calls and his dad surrounds him with love and patience and dignity in spite of the meager surroundings and life.
Orangehelpers is building a new house for the family and will try to provide some simple furntiure. If the dad will build an enclosure, we will also get some chickens to boost the nutrition in the family.


Tuesday, September 1, 2009

Mommy, why am I not handsome? Updated


We met Tien and his mom, Mai, a year ago.


He is the little boy with Agent Orange-related Lymphangioma whose face is distorted by malformations in his lymph system and who looked in the mirror and asked his mom "Mommy, why am I not handsome?" (see earlier blog below) For months we have worked with Mai looking for a effective treatment for Tien. We have taken him to Ho Chi Minh City, first for CT scans, then, when those were inadequate, back for MRIs of his head. We started with wonderful NGOs like Operation Smile. Although they did not deal with problems like Tiens, they were very cooperative in directing us to other groups and individuals who might get involved. After dozens of leads in 5 countries and hundreds of emails, I have to admit I was starting to doubt whether we were really getting anywhere or just going through the motions and making OURSELVES feel better. Then about a month ago, Facing the World, a UK-based NGO working with kids in several countries on cranio-facial problems of all kinds told me they would be bringing a medical mission to Vietnam in August, and although they couldnt deal with Tiens problem there, they would be willing to have their team examine Tien if we could get him to DaNang. We bought Tien and Mai train tickets and sent them on their way.




We heard nothing for a couple weeks and then this morning I got an email announcing that Facing the World would like to bring Tien and his mom to the UK early next year, where he will be treated by a team of specialists in various fields relating to his problem. Facing the World will cover transportation costs, medical costs, an apartment for the family, attendance at a school at the hospital, etc. We just have to get them ready for the trip.

Our joy and relief is indescribable. For the last year we have put Tien and his mom through so much; building hope thorugh 3 or 4 long train trips to Saigon, countless requests to come over to our house so we could take more pictures to send out, etc., all the time worried that their patience and trust in Orangehelpers might lead nowhere. And we have suffered through our own frustration, wanting so much to change this little boys life but lacking the knowledge and resources to do it on our own. So today we made a lot of noise along with all the other people who were involved along the way.

We are so grateful to Facing the World (FTW) and Children of Vietnam (an NGO that partners with FTW in addition to other wonderful work in Vietnam). Its nice to know there are such caring and effective people in the world and humbling to be able to work with them.

"My Right Foot" - May 29, 2009


Toward the end of the month we spent on the Orange Walk 2009, we spent a day visiting with 5 agent orange affected families in Ha Giang, the northernmost province. We were told that we are the first foreigners to come to the border provinces to visit agent orange victims, and we were received with some surprise and much gratitude.

The first two families we visited were an interesting contrast. At the first, there was an older boy lying alone in a back room of the house. He lay on the hard floor with only a straw mat for comfort. This is common when incontinence is a problem, but frequently results in bad bed sores. We were advised that only a few of us should enter the room at a time because he might get loud or upset with a large group. We were told that he used to be taken out in a wheelchair, but for the last 9 years was kept in this bare room. He was able to express himself a bit, but lacked any significant mobility. I don’t doubt his family cares about him, but we left with a feeling that they had given up trying.


At the second visit, we met a girl lying in a wooden platform. But she was in a room with the family and received constant attention and encouragement. Our first reaction to her was “here we go again”, but then it became clear that something very different was going on here. I don’t want to imply that her disabilities are identical to the boy’s. She clearly suffers from severe cerebral palsy. One of the women in our group told her “You’re very pretty.” We were able to make out her response “So are you.” Then a most remarkable thing happened.

First, her parents took her from the bed and tied her to a chair. We weren’t sure what was happening, but they asked for our phone numbers and put a phone at her feet. She proceeded with no help, but a lot of encouragement, to dial each of our numbers with one toe on her right foot, correcting her mistakes with the delete button as she went. Her dedication to the task and joy at her success were incredible. I share the whole series below.

Again, without claiming that these two kids start with the same disabilities, they are still a good illustration of the reason behind our goal of working with families of agent orange victims living at home. The kids who are in the formal care centers receive a lot of care and stimulation and encouragement to achieve what they are capable of. The kids living at home, unless they are lucky enough to live near one of the few day care centers (in DaNang, for example), have much less even results, due to poverty, parental exhaustion, or lack of knowledge. We encourage the development of day care centers, but in the many places where that’s not possible, we strive to bring resources to the families to improve care on site.

Two Little Sisters - May 15, 2009


As the Orange Walk passed through our province, we visit the Nguyen Thach family. Quyen and Van, lay seemingly unaware on a straw mat on the floor. Occasionally you feel like you have made a connection and are seeing and being seen by someone behind those eyes, but normally their eyes are half rolled up into their heads and quivering uncontrollably. They are tiny and warm to hold, like sleepy, droopy babies, but they are 6 and 4 years old. Their withered limbs attest to their lack of mobility and their necks are bent backward like unsupported infants. The girls have trouble sleeping at night. Each parent holds one, the dad in the bed and the mom in a hammock, keeping them warm and physically trying to close their eyelids with their hands.



There is a picture of Quyen, the older girl, at age one month, seemingly a normal, healthy infant, but there are no pictures of Van. The parents explained that when Quyen’s health declined, friends and relatives told them it was because they had taken photographs of the infant too early. So out of fear of damaging their second child, they avoided taking any pictures. Their learning that they had not caused Quyen’s problems was, to say the least, hollow comfort when Van showed signs of the same problems.

Their mother, Pham Thi Suong (34), works mornings in the market, buying produce from neighbors and selling it at whatever small profit she can achieve. The father, Thach (37), stays home all day with the two girls. The family lives on the 60 cents to $1 dollar a day that the mom brings home from the market and a stipend of $13.50 per month from the government. Both grandfathers were in the war (on the ARVN or Southern side, not that it matters). Whether the Agent Orange entered the family through that route or through direct exposure to residual dioxin from the many sprayings in the province cannot be known. In spite of the significant importance of an heir in Vietnamese culture, Thach and Suong are afraid to have another child for obvious reasons.

Their house is adequate and clean, but could use a coat of paint to brighten it up. They have draped a colorful cloth across the ceiling, whether for the benefit of the girls who stare up at all day long or for general aesthetic considerations. It is located right on route 1A, the national highway, directly across from a beautiful bay. There is no running water because of solid rock beneath the property, a problem shared with all of the neighbors on the west side of the highway. The family pays about $3.50 twice a month to have a big pot filled with water. They conserve it carefully to make it last two weeks. In the rainy season they collect water from the roof and from a stream coming off the nearby mountain.

The mom and dad, although they seem to take excellent care of the girls, appear depressed and beaten down, especially the dad, who has no job or gainful outside life. We didn’t have enough time for an adequate screening, but Orangehelpers plans to visit this family again soon, to evaluate how we might assist them in a sustainable way to improve the lot of the entire family. Preliminary thoughts include:

· Seeing if there is a way to improve the mom’s existing income from the market. Before she was married, the mom had a job in a family business in the next town. It is a rice milling business and she would buy rice and resell it to various businesses and households. Their dream, if they had a few hundred dollars, would be for her to invest in that enterprise and take on that job again. It would have the potential to increase their daily income several fold.


· We thought about helping the dad find some gainful employment, but it was explained that he is really attuned to the girls and their needs and the mom is much more effective outside the home.


· Finding a solution to the water problem. This might be no small matter, but might also help a number of neighboring families, too.

We would welcome any ideas or contributions to assist this family. If you are interested please contact us or visit our website www.orangehelpers.org.

More pictures at http://www.flickr.com/photos/orangehelpers/sets/72157617778975950/

Baby Pictures - April 27, 2009

Baby pictures are normally a source of joyous nostalgia. As we sat in the front room of the Ly Van Hay family, we watched their 12 year old son Thanh as he flailed around on the blanket where he spends his days. In spite of his age, he appears to have the cognitive and motor skills of an infant.


During the conversation, I noticed the picture of a happy, healthy infant on the wall and inquired who it was. “Oh, that’s Thanh”, the mom answered. “When he was four months old he was a perfect baby in every way. But soon after that I noticed some problems in his development. And now you see him today.” Thanh is not the only Agent Orange (AO) kid we have met who appeared normal in his early months but then somehow got derailed by this terrible poison.

Seven year old Vo Tran Quoc Sinh (below) giggles and waves his balled fists whenever we pay attention to him, but he never progressed to the crawling stage. His mom is incredibly tender and loving; feeding him, cuddling him, entertaining him with all the energy of the mother of a six month old. But her efforts will not yield the cognitive development a parent hopes for from such attention. He is permanently stalled as a sweet six month old. As with Thanh above, there is a picture on the wall that commemorates an early celebration when Sinh was apparently normal. Ironically the balloons are imprinted with “Happy Birthday” and “Get Well”.

I wonder what the mother thinks when she looks at his baby brother who looks hauntingly like the older brother at the same age (below).

Orangehelpers can’t help make these kids develop normally. What we are able to do is try to make the families more self sufficient and better able to stand the stresses and strains that confront an AO family. In the case of the second family, when we first interviewed them 6 months ago, they didn’t have a plan that would allow us to assist them with an economic grant. Six months later they brought us a business plan for a duck and duck egg hatchery that they wanted to start with an in-law in their common home. Our small grant has helped this family partner in the business and increase their daily income.




If you want to help bring justice to these families, please share Orangehelpers stories, to increase the awareness of people around the world about the plight of these unfortunate kids and families.

Mommy, why am I not handsome? April 15, 2009


Tien is five years old. During his first four years he has had 3 operations to relieve his condition which is called lymphangioma or cystic hygroma. The condition is a lymphatic malformation, a benign proliferation of lymph vessels that interferes with proper functioning of the lymph system and results in the swelling of the left side of his face and jaw. After each surgery, the scars from which are clear on his little head, the surgeon has penned “Likely to recur”. It has recurred each time, usually within a couple of months. The surgeries cost the family several hundred dollars each and are devastating to family finances.

We met him in October while interviewing families for our Small Economic Grants program. Tien is bright and playful. When he is feeling well, he attends a regular day care center while his mom, Mai, goes to work as a nail technician in a beauty shop. He captured our hearts when Mai told us he looked in the mirror and asked her “Why aren’t I handsome like the other children?”

Mai and Tien when we met the in October. Scars from unsuccessful surgeries are obvious.

In December, Mai called Salem and said that Tien was suffering alternating night sweats and chills and increased swelling of his face. The three of them took a 12 hour train ride to Saigon to visit the hospital and seek help, only to be told by the doctors, “Go home. I won’t see you now. Come back in June (the anniversary of the last surgery).” With the help of Vietnamese friends we got the attention of doctors at another hospital where we were able to pay for MRIs and CT scans, but no treatment was available.

In December, in a Saigon hospital waiting all day for his number to be called.

In February, Mai called to say that Tien’s “tumors” had “slipped” and that he had new swellings under his chin. He was also suffering what local doctors called “bronchitis”, but they wouldn’t treat him because they didn’t have any understanding of his underlying condition. We again paid for train tickets for Tien and Mai to go to Saigon, this time at least with a referral, but the doctors again said that they couldn’t operate on Tien until summer when his last surgery will have completely healed and his neck muscles more fully developed. They also indicated that the surgery would probably not be successful.

Tien's "pig food" appeared in February.

In March, Mai alerted us to the fact that new swellings had appeared behind Tien’s left ear. In February, she had told Tien that the doctors would take away the tumors on his chin and feed them to the pigs. I won’t pass judgment on that bit of parenting, but when Tien spoke to his dad on the phone about his latest swelling, he told him “Daddy, I have more food for the pigs.” Tien’s dad is a really devoted father and husband, who must live several hours away in order to earn enough money on construction to support his family. Now, in addition to sleep problems, Tien has difficulty swallowing and is losing weight and failing to grow at a time in life when he should be shooting up.

In March, a new swelling appeared behind his ear.

Now, I didn’t write this blog just to introduce you to this sweet little boy and his family. In searching the internet for possible alternative treatments for Tien, I came across repeated references to treatment of cystic hygroma at some US hospitals (particularly Children’s hospitals in Houston and Cincinnati) by means of sclerotherapy, which involves guided injection of caustic substances into blood vessels basically to shut off improperly functioning branches. It is used for a wide range of maladies including (on myself) varicose veins.

I am writing to see if any of you has an appropriate medical contact who might be willing to review Tien’s records and pictures and provide an opinion as to whether sclerotherapy might be appropriate for his case or if they have another idea other than the ineffective surgery he is likely to receive again this summer in Saigon. His complete records are available on CD in Vietnam and the US and can be sent anywhere. Please let me emphasize that I am not looking for someone to take on the case, although we certainly would welcome that. I know a doctor might be reluctant to “diagnose” without seeing the patient personally, but we would be very interested in learning if we are even on the right track. If so, several avenues might open up:

1. Finding an institution in the US willing to take on his case

2. Finding a hospital in Asia that could perform the procedure affordably

3. Bringing a doctor here from the States to perform the procedure and possibly engage in some other activities during the trip such as training seminars or other medical cases.

Please consider if you have any acquaintances or connections in the medical community who might be willing to look at Tien’s case. If so, we will send out the CD immediately. Each time we meet her, Mai tearfully asks "Please help Tien." I pass her request along to you.

Post script: After meeting the family, Thinking Beyond Borders, an organization leading North American student groups on overseas study tours, donated 10 million Vietnamese dong ($600) to Mai so she can open her own beauty practice and improve the family’s standard of living. Orangehelpers is holding the money while Mai goes through additional training in areas such as wedding makeup.