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 patients sustain a healthy lifestyle.
Eight years ago, Jiale was diagnosed with very complex congenital heart disease and everything changed. His surgery costs more than what his parents earn as farmers, so his father moved to Beijing to find better work. Unable to come to terms with this hardship, Jiale's mother left their family at a time of great crisis. Jiale's only caretaker became his grandfather.
We met Jiale in 2009 and Little Red Scarf was able to provide funding and support for their family during Jiale's surgery. Little Red Scarf workers and volunteers take turns visiting Jiale and his grandpa everyday and encouraged and comforted them through the hardships they face again and again. The first surgery went well, but because of the complexity of Jiale's condition a second operation was necessary. In 2010, Jiale’s grandpa took him to the hospital for surgery consultation and the growth of a couple blood vessels in Jiale’s heart made it very risky to undergo a second surgery.
Jiale and his grandpa returned home but could not give up. For years, grandpa would always take Jiale hospitals in the region for second opinions. When we heard of their situation, LRS staff met up with Jiale again to discuss their options and offer our support. When we saw Jiale again, the young man before us is completely different from the one in the photo taken 4 years ago. He was now very somber and there was a tired look in his eyes. Grandpa told us that Jiale's sister was recently diagnosed with diabetes and the family has been struggling with this additional medical problem. The father has taken on a second job to meet the expenses, and the grandfather is continuing the farm on his own to make ends meet. Their family has gone through a lot.
We decided to return to our original hospital and speak with a specialist again to see if anything has changed. Jiale's grandpa had a calm look and seemed prepared for the bad news to come. Unfortunately, the doctor's opinion remained the same: the surgery was too risky. This time grandpa was able to accept the news. They will continue trying to live a healthy lifestyle but let nature run its course.
While leaving the hospital, we found Jiale smiling for the first time. It seems like a weight fell from his shoulders when he discovered that he would not be operated on. To 11-year-old Jiale, not having to going through the pain of surgery actually lessened his stress.
When we gave Jiale the photos we took during his stay, we asked him to pick out his favorite photo. He immediately pointed to the photo of him with his grandpa. To Jiale, grandfather is his mountain to lean on and rely on. The days with grandfather are the happiest ones.
Original article written by Ying Guan, translated by EV Intern Allison Zhang, edited by Yanyan Zhang
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