​LRS Care: Unbearable Pain of Disease

Little Red Scarf is in Lanzhou, Gansu, and Yunnan provinces. We provide financial support and encouragement to children suffering from congenital heart disease. In addition, we provide families with post-operative care and help the children sustain a healthy lifestyle.
 
Xiao Ma’s family of seven people lives in the Zhang Jia Chuan county of the Gansu province in a large remote mountain. When Ma was about seven or eight months old, she was diagnosed with congenital heart disease. The doctor told them that surgery would cost 10,000 Yuan RMB. Because they were unable to raise that much money, they had no choice but to give up the surgery. The next year, Ma’s grandfather had intestinal obstruction so the family got a loan for his surgery. The family was in poverty.
 
In 2011, Xiao Ma’s father heard that the Civil Affairs Bureau could provide financial aid for Ma’s surgery, so he applied. However, when they went to the hospital again, Ma’s condition had become too complex and the funds provided by the Civil Affairs Bureau weren’t enough for treatment. Ma’s father was disappointed and broke down crying on the hospital ground, hugging Ma tightly. In this moment, he happened to run into one of Little Red Scarf’s employee- Ms. Liu. Ms. Liu cried when Ma’s father told her about his family’s situation. She said, “Why did God have to give you a suffering child like Ma? Your family has been suffering too much. Do not worry, Little Red Scarf will help your family”. Xiao Ma, four years old at the time, then got her surgery with the financial assistance of Little Red Scarf.
 
Originally we thought that the family’s situation would become better as Xiao Ma recovered. Who would have thought that in 2013, Xiao Ma’s grandma would be diagnosed with bile duct cancer. After Grandma received surgery in Lan Zhou, the chemotherapy that followed was abnormally painful for her. In the end, she didn’t make it past the chemotherapy stage; she passed away because the treatment was ineffective.

Xiao Ma before surgery

Picture of Xiao Ma after surgery

In 2014, Xiao Ma began attending primary school and wore a red scarf to school in honor of Little Red Scarf. His health was doing well and he was smart and physically active. Ma’s father maintained contact with us and introduced us to many children with congenital heart disease so we could help them. Each time he speaks with Little Red Scarf, Ma’s father is always very grateful for the help we gave his family. He always says, “Little Red Scarf is our family’s savior”. From our conversations with Xiao Ma’s father, we can tell that he is a simple and optimistic person. Again, we originally thought the family’s condition would improve through the hard work of Mom and Dad. ​

But in February 2016, Xiao Jun, Xiao Ma’s little brother in first grade, was diagnosed with Myeloma by multiple hospitals in Xi’an. His condition was really serious; he was being treated in the Hematology and Oncology department of the second inpatient unit in Xi’an City Children’s Hospital. Jun’s treatment was very expensive; the total cost from chemotherapy to surgery was 300-400 thousand Yuan RMB. This cost was no different than an astronomical figure for Jun’s family. Jun’s condition was very serious. However, he had a big reaction to the medicine so the hospital could only use nutrient solution to keep Jun alive. His father cried rivers each day, watching his son suffer but unable to do anything to help. 

​The hospital decided to start chemotherapy instead. ​Chemotherapy is around 7-15 days and cost about 5000 Yuan RMB for each day. After the first round of chemotherapy, they wait a few days and complete the second one. If the second chemotherapy is not enough, a few days later there will be a third round or even more rounds. The cycle is repeated until the lesions are under control, then the doctors can perform surgery. Jun is about to receive his 4th chemotherapy. The cost of his last 3 chemotherapies added with the family’s traveling fees have totaled to 200,000 Yuan RMB. They now owe 130,000 in loans. A part of the 130,000 Yuan was given by good hearted people in their community. The doctor estimated that Jun would need a total of 5 rounds of chemotherapy before his surgery. The estimated cost of surgery is 300,000 Yuan RMB.

Xiao Ma, his grandfather, and his sister take a photo together in front of their old house

The whole family (Front row left is Xiao Jun, front row right is Xiao Ma)

Xiao Jun in a hospital bed

Xiao Ma’s family owns 7 Mu’s (1 mu is about 6000 sq.ft) of land. They grow wheat and corn on the land, which is sufficient food for the whole family. When there’s no farm work, Ma’s father works as a stevedore at the Tang Jiu market in the state of Lan. Each year he can work a maximum of 6 months and earn 180,000 Yuan RMB. Thus, the family has no way to pay off the hundreds of thousands of Yuan in medical bills. Although Jun’s dad never went to school, he saw that disease was taking away Jun’s life little by little each day. Thus, he gained the courage to look for help through WeChat (social media), newspaper, local governments. Under Jun’s father’s hard work, those with disease, fellow locals, and those with a big heart began to help out one after another. With their help, Jun had the money to receive his 4th round of chemotherapy. However, there was still the 300,000 Yuan for his surgery. Jun’s father could not earn that much money even if he worked his whole life. But Jun’s health couldn’t wait. Each time after Jun completed a round of chemotherapy, his father would have to go around looking for money for the next round. Sometimes, Jun’s mom would be with him in the hospital but his father would be away gathering money.

​In the past 10 years, this family has been scarred with disease. Of the 8 in their family, 4 had very serious illnesses. Their Grandma even passed away. The family had accumulated so much debt so quickly because treatment was so expensive, but illness had no empathy for this family and continued to erode this suffering family. Xiao Ma’s family is only one of the tens of thousands of families that are also scarred by disease. There are still lots of kids like Xiao Jun waiting for treatment. There are still many parents like Jun’s father going around to raise money for their child’s treatment. One person is very weak; we must team up and work together in order to help Jun and other kids that are fighting for their lives. Let us race against time and save more lives!

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Original article written by Guan Ying, translated by Michael Chau, and edited by Yanyan Zhang