Little Red Scarf is in Lanzhou, Gansu province and provides financial support and encouragement to children suffering from congenital heart disease. In addition, they provide families with post-operative care and help the children sustain a healthy lifestyle.
Jia Le Couldn't Even Walk to School
Jia Le, a 12-year-old boy, lives with his family in a new village near Dingxi City, Gansu Province. The village, which is an hour away from the city, was built by the government and looks uniform and tidy. Jia Le's family has 5 members, headed by a single father. Jia Le’s mother left the family after she found out Jia Le had serious congenital heart disease. His father is always away for work, so his grandfather and grandmother take care of the three kids.
Jia Le is 12 this year, but when he was 5, he underwent surgery and treatment for his congenital heart disease, with help from Little Red Scarf. Jia Le’s medical condition was complex. The surgery helped alleviate the symptoms of cyanosis and clubbing. However, he was still having shortness of breath, so the doctor recommended regular checkups and a possible second surgery. For the past six years after his first surgery, Jia Le’s family has been bringing him for regular checkups. But because his pulmonary artery was not developing well, it was not possible to get a second surgery.
Jia Le’s home was originally on a mountain, and going to school required a trip down the mountain and across a river. When Jia Le first started going to school, his grandfather had to carry him down the mountain and across the river, due to Jia Le’s medical condition. But Jia Le’s uncle got older as time went on and was eventually not able to carry Jia Le to school. Jia Le’s aunt had a house given to her by the government, so she gave her house to her parents, making it easier for Jia Le to go to school.
Still Limited in Physical Activity
As a 12-year-old, Jia Le is in a prime time. But he cannot participate in gym class with his classmates, let alone walk for long periods of time. He’s often found leaning against a wall, just reflecting and thinking his personal thoughts.
Jia Yi Diagnosed with Diabetes
In 2014, Jia Le’s family found out that Jia Le’s 8-year-old sister Jia Yi had diabetes. She usually has to take two insulin shots per day. When her diabetes is severe, she needs three shots of insulin a day. Not only is she not allowed to have snacks or junk food, but she can’t even eat the meals normally eaten at home. She can only eat food that is low in sugar content.
Jia Yi’s family planted 3 mu (about 1/2 an acre) of buckwheat just for Jia Yi to eat. (Buckwheat is low in sugar content and is good for diabetics). Kids that are accustomed to eating white flour can endure eating the buckwheat bread that Jia Yi’s grandmother makes maybe once or twice, but eating it every day is too much to handle. Her grandmother says Jia Yi has thrown tantrums because of the buckwheat bread. Her school has a nice free breakfast, but she can’t eat it because of the sugar content. She then comes back home to see buckwheat bread again and becomes too angry to eat.
Jia Le’s family relies on collected rainwater as a water source, but Dingxi has very little rain.
Jia Le’s aunt is pointing at the hole where rainwater enters the water cellar. When it rains, they clean the yard/ground, and once the dirty rainwater has been pushed away, they open up the cellar’s hole by removing the plug. The collected rainwater is their source of water.
The giant dish in the photo is a solar stove that is commonly found in Gansu villages. It relies on the energy from the sun to boil water, and can even be used to cook during the summer. It saves money and is good for the environment.
Jia Le’s grandparents are quite frugal. The family of five relies on a few mu’s (less than an acre) worth of crops for the entire family’s food for a year. Jia Le’s father’s salary is enough for the kids to go to school, but the medical expenses leave the family in a predicament.
Grandfather Treated for Cancer
Who would expect that destiny makes mistakes too? In August 2015, Jia Le’s grandfather was diagnosed with bile duct cancer. He received bile duct resection surgery in Lanzhou, and had 6 chemotherapy treatments after the surgery, which cost over 100,000 RMB ($15,000 USD). Even after claiming rural cooperative reimbursement for the medical expenses, the family owed over 60,000 RMB ($9,000 USD).
This situation can be compared to a house with a collapsing and leaky roof that experiences heavy rain every night. The family has 3 people with serious diseases. Now that the grandfather is sick, he can no longer do farm work for their food anymore.
Grandmother Passed Out
The grandma has high blood pressure as well. One time she passed out in the kitchen, and later awoke and crawled to her room to rest. We asked if she took medication for high blood pressure to which she responded, “There’s barely enough time to take care of the 3 other people with serious diseases. There’s no time for me to take medication! What are the kids going to do if we die, though?”
Providing Care Money
After Little Red Scarf learned about Jia Le’s family’s situation, we helped them apply for two donations through Gansu Care, totaling 6,240 RMB ($960 USD). We gave this money to Jia Le’s grandfather.
Gifts from Cindy's Family
Cindy’s family from Canada bought milk and fruit for Jia Le’s family. Auntie Cindy even prepared presents from Canada for the kids.
The experiences of Jia Le’s family are sad to hear. The care money from Little Red Scarf will provide the family with money for medical expenses, but we hope that the family suffers the pain of disease as little as possible. We will work hard with the family to find better treatment methods for Jia Le.
Original article written by Guan Ying, translated by Michael Chau, edited by Carolyn D.
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