|Xiao Jie snuggles in her mother’s lap. She knows that she is going to have a little brother whose birth may save her life. (Guangzhou Daily/Su Junjie)|
Blood transfusion, hospitalization, chemotherapy, transplants…for people who have not experienced such hardships, it is difficult to imagine. Every sign of improvement or progress cause dramatic changes to the mood of the little girl’s parents.
Guangdong has the highest incidence of thalassemia in China - 3,000 are suffering from the illness. Data shows that one in every nine people in Guangdong Province carries the thalassemia gene. If both spouses are thalassemia gene carriers, the risk of their children being born with severe thalassemia is relatively high. Children with Thalassemia need lifelong blood transfusions and other treatment that costs 100,000 yuan every year, and more than 90% of patients cannot afford to pay.
This is a story about rebirth.
Wang Yijie, a 4 year old girl, was diagnosed with thalassemia major when she was just four months old. She relies on regular blood transfusions every 2-4 weeks and an injection that takes 8-10 hours, 20 times per month, to sustain her life.
Her father Wang Xiaochun and her mother Luo Lihua describe the days of desperation that ensued when they first heard the diagnosis of their little daughter. They researched dozens of cases and files through the internet and realized that a bone-marrow transplant is the only alternative to lifelong blood transfusions.
Wang’s parents tried to find matching bone-marrow donors through China’s marrow donor program (CMDO). But after a two-year wait, they had not yet found a donor with matching bone marrow to Xiaojie.
The turning point came in August last year. Luo Lihua had an unplanned pregnancy. Doctors told the couple that there was a 25% chance that the new baby would have a bone marrow match with their daughter. The couple decided to have the baby and take the chance. Happily, a fetal cord blood test showed that the stem cells matched with Xiaojie’s.
After Xiaojie’s story had been reported in the media, kind-hearted people raised nearly 300,000 yuan for her transplant surgery.
Xiaojie was hospitalized and started her battle with thalassemia on May 10, 2013. She went through preoperative chemotherapy, transplant surgery, post-surgery observation, and recovery.
Over the next six months to a year, Xiaojie has to live in aseptic isolation at home, and undergo regular blood tests to monitor her weak immune system.
The first month of post-surgery observation showed that Xiaojie’s white blood cells were growing in good condition. She was finally discharged from hospital on June 24. The hardest is past, but there is still a long way to go on Xiaojie’s road to recovery.