“The fishes are my friends,” explains 11-year-old Lu Zhong Qian from China. And his mother, Wang Li Xia, is rightly proud of her son’s artistic talent. It won him a prize in a painting competition. “My son paints differently to other children of his age,” the mother says. “His pictures express the desire for a normal, harmonious life free of pain.”
L u has hemophilia. The young Chinese boy was diagnosed with the blood disorder when he was very small. When Lu started to crawl at the age of eight months, his parents were surprised how often he developed bruises. Lu’s blood lacks a specific protein that forms part of the coagulation system. If this protein is present in insufficient quantity, or not at all, the coagulation cascade in the blood is interrupted. Blood coagulation cannot function efficiently. Minor internal injuries can cause major bleeding into the muscles or joints.
But Lu’s parents also had to learn to cope with their son’s condition. “Like all parents we had his future mapped out in our minds. My husband dreamed of Lu going to college,” recalls Lu’s mother, Wang Li Xia.
After they had been given the diagnosis, Lu’s parents were in despair and felt very isolated. Lu’s mother had to take him to the hospital on many occasions. Every visit to the emergency room after he had injured himself filled her with fear. The family finally found a doctor with experience of the hemophilia at the Beijing Children’s Hospital. He told the mother that Lu would be able to lead a nearly normal life with the help of medication. Later on he would even be able to marry and have healthy children. That gave Lu’s mother the strength to go on.
In August 2013, Wang Li Xia and her son participated in the Asia Pacific Hemophilia Camp in Qingdao, China, so that they could learn more about the disorder and meet new people in the same situation. Thirty-five children aged between seven and 17, their parents and medical professionals attended the camp, which was supported by Bayer HealthCare. Lu made new friends at the camp, and his mother now knows that she doesn’t need to feel as if she is alone with her son’s disorder.