Hemophilia Home is a nonprofit established to improve the quality of life for patients with hemophilia by collecting knowledge on hemophilia and helping destitute patients.
My child, born during the Year of the Ox, is 13 this year. He is smart and sensible, although he is in bad health due to a lack of coagulation factor VIII. Instead of playing with other children his age, he must stay home alone.
This disease is hard to cure. If he bleeds, he must be injected with Factor VIII to stop it. Because of the unbearable pain, he is unable to perform outside door activities. Sometimes he says to me, enviously, “Mum, I really want to play with them.” But if he sees me crying, he tries to comfort me, whispering, “Mum, don’t be so sad. I’m just saying so. I would be very glad if the treatment could cost less so and I wouldn’t feel bad occasionally.” My son was supposed to have a happy childhood and enjoy the wonderful things in life, but they all passed him by. He is a good student, especially in mathematics. He is also fond of playing the cucurbit flute. If only he could live a normal life through his adolescent, mid-life, and gerontic period!
Original article was written by Liu Zheng, translated by Shishi Ma, and edited by US interns Isabel Auyeung and Lauren Kam.
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