Angel of the Month: Minjuan Minjuan is a quiet yet brave girl. She shows no fear of needles, surgeries, or painful and unfamiliar exams. Instead, she worries only for her three young brothers and sister while she is away from home, hoping they will behave well while she is away. Born to a family with too many mouths to feed and too few helping hands, 11 year-old Mingjuan learned early on to take care of herself and her younger siblings while her mother worked in the field alone.Her father could not labor in the fields due to a medical ailment that he left untreated for fear of the cost, and Mingjuan’s own heart disease, discovered during a school physical exam when she was seven, similarly had no hope of being treated. Across the past 4 years, the family continued life as usual, but grieved their inability to look after their oldest child. The family atmosphere changed recently when they were told of Little Red Scarf. Mingjuan signed up for sponsorship and was admitted into our partner hospital early this month. Since then, her path toward health has been smooth. Mingjuan has always been like a little mom taking care of her family, but now we hope to take care of this brave little girl in her recovery from heart disease. Background Information: Mingjuan, Female, 11yrs, VSD, first contacted by Little Red Scarf. For more on Mingjuan’s journey, see her project page. Post-Surgery Update: May LRS Children This month, our post-op follow-up phone calls reached out to families of children treated in May. On those calls, we were extremely relieved to hear that over 90% of the families are busy with back-to school preparations. Because of their health conditions, more than 90% our Little Red Scarf school-age children had stayed home for longer than a semester. Some had even suspended school for more than 10 years, cut off from any sort of education and classmate companionship. For these children, the hectic process of meeting teachers, buying new stationary, and catching up on reading and writing is underscored with beautiful hope for the future that could not have existed without LRS. Little red scarf, as an honorable accessory in China that all elementary school children would like to wear to school, is something we envision on every child as we sponsor them with your support. Family Profile: Haoyang Like a typical Gansu village girl, she wed at 19, and bore her first son a year later. When her son had an accident in which he was severely burnt and scarred under her care, her confidence as a mother was shattered. She could no longer show empathy or affection, even after the birth of her second child. As a result, her boys grew up emotionally distanced from their mother. When Haoyang found to have congenital heart disease last Spring and was hospitalized later in the year, it was very difficult for both mother and the son; even last May, when three-year old Haoyang came to Beijing for treatment, it was still obvious he was not close to his mother. Haoyang experienced post-surgical complications and struggled for survival in the ICU for more than 60 days. During this time, our team watched his mother’s heartache, regret and concern for her son. The silver lining to this heart-wrenching process was the softening of this poor mother’s heart toward her child. We shared her joyful tears when the news of Haoyang’s miracle awakening came last week. When Haoyang was transferred to the regular ward today, we saw the fear and distance in his mother’s heart turn to thanksgiving and love. We congratulate this family on not only their son’s new life, but also the rebirth of his relationship with his mother.  For more on Haoyang, see his project page. News and Updates Medical Outreach- At the beginning of this month, the LRS team participated in medical outreach to Huining and Linxia County with our partner hospital, Lanzhou University First Hospital, . We screened more than 500 patients, with many families signing up for LRS support on the spot. Professional Publicity – We participated in the Congenital Heart Disease Treatment Progress conference held in Gansu, and publicized our program to many medical practitioners from county and town hospitals. In making ourselves known to people from medical workers to farmers, we hope to extend our reach and impact. Welcome!- We welcomed a new staff member, Guanyin, this month. Her passion and experience supporting poor students in a professional setting will greatly benefit our team. Says Guanyin about her upcoming role, “In one years’ time, I hope to be more mature in the way I interact with the families; understand their hearts and speak their comforting language in times of their greatest needs.” We are so thankful for her enthusiasm and can’t wait to see how she adds inspiration to our team.

Friend on Facebook Forward to a Friend Fangdi, last month’s focus child says thanks. See her project page. Xuanxuan tells us, “I’m going home! Thanks Little Red Scarf aunties and uncles!” See his project page. Hear Wenxia’s family share, “By giving us a healthy family, you have let us feel that compassion still exists in society.” Or, see her project page. Xiqiang shows us her gratitude. See her project page.

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Jia Le and his grandpa are napping when I open the door. When he sees me, Jia Le jumps out of bed and wakens his grandpa. Where he finds all this energy I do not know, but it makes me glad that he’s so positive. He excitedly shows me a hotel booklet, and he demonstrates how it folds and unfolds, and how it has lots of pictures, and how it has a penholder. On one page he wrote all the numbers up to 43.

It’s so interesting to see Jia Le get more comfortable here in the hospital, and how his interaction with us has changed from the first encounter. The first day I saw him more than a week ago he kept hitting me (playfully, but still not a very friendly gesture), but I guess now he’s found it more productive to share stories and words instead of fists. I’m really coming to like Jia Le.

They have just scheduled his surgery for next Wednesday. He has what is called “ventricular septal defect” (VSD), a type of congenital heart defect, and his particular manifestation is very complex. According to Xiaobo Jiejie, the decision to do surgery was a long and complicated one: both doing the surgery and not doing the surgery are very, very risky. I really wish the best for Jia Le, and will update you soon.

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Seanan Fong is an intern at the Little Red Scarf Alliance in Lanzhou City, Gansu Province. This is part of a series of posts for the next nine weeks that documents the experiences and stories of children with congenital heart disease in Gansu.

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I made a quick visit this afternoon to the hospital to catch up with the kids in the hospital. I don’t have many details today, but I want to introduce a few new children and update you on the others.

There were three new children who had entered the hospital while I was away on my trip to the country. Here’s Yuer (154 悦儿), whom we found roaming the halls on his grandmas’ back. He’s extremely kind and well-behaved, and he greeted us cheerily. His surgery is scheduled for Thursday.

Jiale (W3 家乐) was a little more mischievous. He revealed the paper airplanes that he kept stashed below his blanket. They didn’t fly very well, but he was nevertheless eager to show them off. From what I heard, his disease is especially severe, so they’re still figuring out his surgery and won’t be until next week at least.

Little Hao (W50 小浩) was sleeping when we entered. I hope to get to know him better next time I come. He’s scheduled to have surgery next Monday.

There were also two more kids whom we’ve already met. Little Ji  (153 小吉) was quiet, calmly resting and recovering from surgery.

Meanwhile, Xiaorui (141 小蕊) is still in the hospital. From what I picked up (and this might not be accurate, so please wait for updaes): There’s a possibility of her getting another surgery to take the water out of her lungs, but it’s very risky. She’s eating better, but it will take a while for her to completely recover.

I gave all of them mooncakes to celebrate Mid-Autumn Festival! Happy Zhong Qiu Jie!

Since I was gone for a while I missed Huier (152 慧儿), Xiaoqi (151 小琪), and Yanzi (150 燕子) before they left. Hopefully they found a safe journey home. I wish them the best!

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Seanan Fong is an intern at the Little Red Scarf Alliance in Lanzhou City, Gansu Province. This is part of a series of posts for the next nine weeks that documents the experiences and stories of children with congenital heart disease in Gansu.

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On September 15, 2010, I went to the countryside with my co-worker Xiaofan. We left on Wednesday afternoon and returned on Saturday noontime. It turns out the trip was for three interrelated purposes: The first purpose was to talk to rural teachers to get them onboard with helping refer families with children with congenital heart disease to Little Red Scarf. The second purpose was to visit a few potential beneficiaries of Little Red Scarf. The third purpose was for Xiaofan to make a social visit the school where she used to work. Of course, that and her personal acquaintance with the local teachers conveniently coincided with the other goals.

1. Lanzhou City (兰州市) to Dingxi City (定西市) — Bus ride up to Dingxi City

We took a bus straight to Shixiawan Township (石峡湾县). (Contrary to my earlier post, we actually didn’t have to change buses.) Total time about 4 hours, cost 23 yuan.

To get there, the first stretch was a long ride from Lanzhou to Dingxi City (around 2 hours). Between the two cities the terrain was dramatic: Basically, it was long stretches of flat land, then suddenly huge mountain faces rising straight up from the ground. (The road tunneled straight through them.) The landscape was arid, dusty and very sparse. However, it seemed like everywhere there were traces of human modification: either the land was stepped and plotted with farmland, or it was terraformed with small shrubs growing in straight rows across the faces of hills and mountains. It really reminded me of the Gansu Pavilion at the World Expo in Shanghai, where they talked a lot about transforming the ecosystem of Gansu from an arid wasteland to fertile farms.

The road itself was extremely nice: It was brand new black asphalt the entire way between the two cities. Some of it was even tree-lined. However, to get onto this nice new expressway I noticed you have to pay a toll.

My first thought upon approaching Dingxi City was that it looked like Industrial Age London. There were big stretches of dirt and big refineries in the distance. We passed through Dingxi downtown, and I thought it looked very much like every other middle-sized city in China. Hazy air, big broad streets, some new shiny buildings, lots of old tenement-looking buildings, some parks with people singing, lots of construction.

2. Dingxi City (定西市) to Shixiawan Xiang (石峡湾乡)

The second stretch of the trip was from Dingxi City to Shixiawan Township (around 2 hours). When we passed through the outskirts of Dingxi the road was extremely bumpy — there was not even any semblance of a road, we were just traveling on dirt. My butt was really sore and knotted up at this point. But after a while the road became very nice again, all the way to Shixiawan.

The landscape on this stretch became very different. While still arid, the terrain was hilly rather than flat with sudden cliffs. We traveled along the tops of these hills (on very nice roads!), and quite dramatically, beautiful and grand vistas unfolded. It looked just like a pastoral painting — farmland into the horizon, with little villages tucked into the elbows of terraced hillsides. It was all very dry though — there were no rocks, everything was caked mud, and the crops were all very low-growing. The Dingxi area is most famous for its potatoes, and there was also some corn, wheat, and sunflowers. I believe those are all pretty low-water crops that don’t need very fertile land. I marvel that all this farmland, straight into the horizon, was probably non-arable until the Columbian exchange, with the introduction of New World crops to Asia.

The road was still very nice — Xiaofan told me later that all this was new and wasn’t there when she worked here two years ago. Nevertheless, the roads winded around the hills, making it very hard to drive and see ahead. Whenever a car approached a sharp curve in the road, it would honk to warn potential oncoming cars just around the bend. The bus nearly hit someone one of of the high mountain roads.

We started passing through some villages, and we finally arrived at Shixiawan. When we got off the bus, I was really blown away by the beauty of the landscape. The town was perched on the top of a hill, and it overlooked these beautiful hillsides painted with a patchwork of dry crops. The pictures should speak for themselves. What pictures can’t tell, though, is the freshness of the air out in the country. I felt like the week of lung-bashing in polluted Lanzhou was immediately reversed in Shixiawan’s pristine air.

3. Shixiawan Xiang (石峡湾乡) — met 宗老师

At Shixiawan we met up with the first teacher, Zong Laoshi (宗老师), at the town’s local elementary school (plus kindergarten) campus. Shixiawan is the main town in this area, and its elementary school houses the administration for the broader school district.

Zong Laoshi is not actually a teacher; he is one of the school district’s administrators. (But he’s still called 老师). Xiaofan knew him from her time teaching in this school district. He invited us into his room (he lives in a room in the school) and he and Xiaofan chatted for a while. Xiaofan enlisted his aid in helping find children with congenital heart disease in the area.

We also got to see one of Little Red Scarf’s success stories, Little Hong (小红). She had surgery in 2008. When we saw her she looked very full size, very happy, alert, walking. You’ll see pictures on my blog in a bit. She talked; she didn’t seem retarded at all. I remember now that Xiaofan asked her if she can run — she said she can run with the other kids, just not as fast as most of them. I don’t have much details on her.

4. Shixiawan Xiang (石峡湾乡) to Xinjian Cun (新建村) — saw the local elementary school, slept over

After spending time at the Shixiawan elementary school, we took the local bus to the tiny tiny village called Xinjian Cun (新建村) where we stayed the night (bus ride around 15 mins, cost 2 yuan). The bus driver still recognized Xiaofan from 2 years ago! Xiaofan explained that lots of people recognize her because it is rare for outsiders to come to the village. Everyone was all very friendly on the bus, and they were very familiar with each other and with the bus driver. I really felt the small-town feel.

The bus dropped us off by the road on the top of a hill, and we walked about 30 minutes downhill to get to this village. It was a really lovely walk — it felt like walking through the open space by our home in California. [See pictures.] Xiaofan told me a lot about her experience here [see "Xiaofan"] and a little about agriculture in the Dingxi region [see "Agriculture in Dingxi"]. On our walk a few farmers out in the country stopped to call out to us — some of them recognized Xiaofan and asked for her to come to their house for dinner.

Xinjian Cun is not really a village, it’s more like a collection of a few farms and their families, with a school nestled in the middle. When we arrived at Xinjian Cun we first went to the school. It was a very small school — three buildings in total. As the years pass it is growing even smaller. It used to have around 40 children, and now it only has 10+. According to Xiaofan, this is because of the one-child policy. Very soon there will be no need for a school at all.

This was the school where Xiaofan used to work, so she knew all teachers there. There are three teachers teaching at the school now. They all live on the school grounds during the week, but they go back to their homes on the weekend. There are two male teachers and one female teacher (generally it seems like most of the countryside teachers are male). They teach the core subjects (Chinese, English, math) for elementary school grades 1-6. In the village they basically only teach the three core subjects — Chinese, math, and English — which will be tested in order to graduate elementary school. The rest — science, art, music, PE — is 随便; the teacher might give a lesson from time to time, but since it’s not tested it’s not viewed as important, plus there’s no one to teach it.

Xiaofan caught up briefly with the teachers — she was very close with them since she worked with them for a year. Then we went over to one of the villagers’ house right next door the the school. Teachers are very respected in the countryside, so Xiaofan had a really good relationship with the parents of her former students. When she worked here, she used to visit the farmer families’ houses on the weekends, and at each house she visited they would cook a meal for her. Today this family near the school was very kind and let us sleep over for the night.

While we waited for them to cook dinner, I asked to go to the village temple, which was right nearby. Only men are allowed into the main temple, so one of the male relatives took me and Xiaofan. First we went into a smaller temple on the side, which women can also enter. It is a temple to the goddess San Qing Niang Niang (三请娘娘). Apparently this building that women can also use was built recently, in 2006 or 2007. The villagers all contributed a little bit of money to build it. It certainly was very pretty, both on the outside and the inside. Most interesting was the inside: It was very small and very intimate, so the white statues of the goddess and all her attendants were very very close (unlike in the big city temples we have seen). I felt a little bit of the supernatural in here; it was a little spooky. Then we went into the main temple to San Fo Ye (三佛爷). This temple was much older. Though the outside was prettier, the inside was surprisingly a lot less impressive. The statue of San Fo Ye was smaller. It was also curtained, so all you could see was part of his face.

Then we went back to eat dinner. I watched the mother and a female relative cook in the kitchen. They rolled fresh pasta from scratch — they made 面片, small pieces of pasta in a clear sauce, with thin slices of potatoes. (I saw them use packaged powder to thicken and flavor the sauce). They also had stir-fried bell peppers. It got really smoky in the kitchen and my eyes started watering — it seemed like there was no ventilation at all. It was very good and I was starving, but I was a little afraid of eating it at the time. Hugely fortunately, the whole trip I didn’t have any bowel problems!

The family had to eat no meat and no leftovers, because apparently there was a special event they were preparing for. They had to go up to the hills and 念经 recite scriptures of some sort for their ancestors. Apparently this happens only once every 10 years for an entire week. I couldn’t really make out any more details.

After dinner Xiaofan and I went back to the school and Xiaofan socialized more with the teachers. I went outside and walked around the small schoolyard, enjoying the really refreshing breeze and the clear moon. I thought about how I must be totally romanticizing the rustic life, but as long as the harvest is good and you don’t get sick, it seemed perfect. That led me to thoughts about becoming a doctor, and about how important being “comfortable” in life is. (More on that later.)

We went to sleep very early. I slept in my sleeping bag in the main room in the house. There’s a humongous sleeping area there that only the grandpa (Yeye) sleeps in. I slept there next to the grandpa. Sleeping was very delicious — unlike in the busy city, it was really quiet in the country with no sound at all. The temperature was also perfect — cool enough to make my sleeping bag nice and cozy. I also had cool dreams, but I remember them feeling very American… Even in the beautiful countryside, I must’ve missed home a little.

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Here’s his bio for some background on Little Ji. Again, it is translated by me, so please forgive and correct any errors!

Little Ji was born into a large family. His grandparents dearly loved him, but just three months after Little Ji was born, the doctors told his parents that he had congenital heart disease. In order to control the disease early, Little Ji was hospitalized for five months. That one hospitalization cost his family their entire savings, but Little Ji’s illness still did not improve. Little Ji’s father does labor away from home, and his mother stays at home taking care of the children. Each year his family makes only just enough to support basic living essentials. With the help of the local government, we [at Little Red Scarf] found out about Little Ji’s situation, and very soon Little Ji could come to the hospital to do surgery. Little Ji will have a wonderful future — let us wish him luck!

Huier from the next room over also came to welcome Little Ji

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When we walk into Huier’s room, she is enjoying a sweet biscuit. Yunyun Jiejie fills out some forms with Huier’s parents. I ask the parents how they have been. They’ve had no opportunity to rest, they say — all three sleep on Huier’s patient bed. Tomorrow will be Huier’s surgery, so somehow they need to find enough rest so that they can support Huier as she recovers.

These days it’s hard, though, for Huier’s parents to rest easy. When Huier was born, the birth was complicated and her mother had to stay in the hospital. The fees amounted to 30,000 yuan. When Huier was one year old, her parents already knew she had congenital heart disease, but they had no money to treat her. Today, they still have not repaid the 30,000 yuan from Huier’s childbirth, and they still have not borrowed enough money from their relatives and friends to pay for Huier’s heart surgery tomorrow. Tomorrow the parents will be going back home to get a loan from the bank.

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Today Yanzi looks a lot more energetic. Her sly smile has come back, and her brother tells me that she can walk around now. We bump into Dr. Zhang, who does a quick check-up of Yanzi. She looks like she’s recovering well!

Xiaorui is doing better, says her grandmother, but she is still grumpy as ever. “Baba,” she says again. She’s here in the hospital with her grandparents, but she still misses her other family members back home. Her father has to keep working, and her mother is looking after her one-year-old sister at home.

Xiaoqi looks as good as new! She’s very coordinated — yesterday she was peeling eggshells and today she can drink water lying down, without spilling. She’ll be leaving the hospital soon.

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Seanan Fong is an intern at the Little Red Scarf Alliance in Lanzhou City, Gansu Province. This is part of a series of posts for the next nine weeks that documents the experiences and stories of children with congenital heart disease in Gansu.

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I see Yanzi for the first time since her surgery. She looks very tired, and understandable doesn’t want to talk very much. Before we go, though, she gives us a smile, and so I feel at least she is okay.

I want you to meet Yanzi’s older brother, who is ten years older than Yanzi (who is 12). I really admire him a lot — he has cared for Yanzi non-stop this entire time, when his parents are not available. Whenever Yanzi is in pain or distress, he is there to comfort her. I think he is a worthy role model for all of us as a sibling, a son, and a person.

Meanwhile, it seems like Xiaoqi is as good as new again, at least in terms of her unconquerable spirit! When we visit her she is peeling an egg — very skillfully, may I say, for a two year old. Yunyun Jiejie asks if she can have any of the egg, and Xiaoqi generously offers her the egg shells

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We welcomed Huier to the hospital today. Our staff had visited their family a little while ago, but they wanted to wait until now to have the surgery because (1) the family was busy with the harvest and (2) they needed time to save up money. At four years of age, she is quite a charismatic girl — she was definitely posing for a beauty shot when I took out my camera!

Here is a translation of Huier’s bio from her project page:

Huier is four years old. She has an older sister who really loves her; even though the older sister is only [12] years old, she really looks after Huier. When the staff visited Huier’s home, her mom was away from home to work [as a cook for migrant peasant workers in the city]. Her father was very busy at home harvesting wheat. The whole family lives inside an abandoned cave. Their lifestyles are poor and honest. When Huier meets strangers she really is not shy at all, but when we left she was really upset. Huier’s father is really worried about Huier’s illness. For a very long time, he has been looking for help. When he found out about Little Red Scarf, he contacted us right away. We also will help her recover — and recover she will!

I scanned the family photo we have on file. I hope Huier’s sister doesn’t miss Huier too much during her stay at the hospital.

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