Sunshine flooded through Chen Jiarui's bedroom window, warming his frail body. 'The taste of sunshine is good,' the then two-year-old boy told his mother, Li Ping , who was nursing him through his fight with thalassaemia, a hereditary blood disease that affects nearly a million mainlanders. This one simple statement jolted her out of her depression and stopped her complaining about her misfortune. 'I was moved. Even an anaemic boy was able to appreciate the natural beauty around him. I felt ashamed of my cowardice,' Ms Li said. Jiarui was six months old when he was diagnosed with thalassaemia major - a haemoglobin deficiency that leaves sufferers pale and tired, with little appetite and poor physical development. If untreated, the disease can kill victims by the age of 10, but Jiarui has been lucky and will turn 11 this Christmas. The burden of her son's disease once made Ms Li feel isolated and abandoned, but she was actually not alone. Wang Shaoliang, a paediatrician from the No2 Hospital of Zhongshan University in Guangzhou, estimates there are about 800,000 carriers of thalassaemia on the mainland. The disease is particularly common in coastal areas, while the incidence rate in Guangdong and Guangxi , about 3 per cent, is the highest on the mainland. Every year, 4,000 babies are born with the hereditary disease in Guangdong. Ms Li and her husband were desperate to find a cure. They tried traditional Chinese medicine and turned to the spiritual world. Failures further frustrated Ms Li. But through the years of struggle, her husband's strength has been crucial. 'He was once advised by a doctor to give up [on Jiarui] and to try having another baby. He didn't give a damn about that idea,' Ms Li said. However, Ms Li's battle against the disease turned a corner when she contacted the Children's Thalassaemia Foundation in Hong Kong in 1998. She learned about treatments to sustain patients' lives, such as regular blood transfusions and therapy to mitigate the side effect of 'iron overload'. Ms Li's family is one of the lucky few who can afford the expensive treatments. For an 11-year-old boy like Jiarui, the monthly cost includes 1,400 yuan for blood transfusions and 2,000 yuan for treatment of side effects. The cost increases with age. But in contrast to the free treatment in Hong Kong public hospitals, the central government has so far not reduced the costs. The only help comes from civic groups. These groups' schemes can alleviate the patients' financial burden, but will not help eradicate the disease in China. 'The best way to eradicate thalassaemia is prevention,' Dr Wang argues. In 1986, the Ministry of Civil Affairs and the Ministry of Health introduced compulsory pre-marital and pre-natal medical checks. But the results were, at best, mixed. Ms Li said doctors simply asked her and her husband if they thought they had any hereditary disease. The situation may become worse. The State Council has approved amendments to the Marriage Law which made medical check-ups voluntary to simplify the registration process. The result has been a significant drop in the number of couples undergoing medical check-ups. Chen Shu, deputy chairwoman of the All-China Lawyers Association, said confidence must be restored in the check-up system.
