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 son was born in July 2007 - a very cute, plump baby at the time of birth. I was so excited to have my first child and laid out plans with joy for his future. However, the good time didn’t last very long.
When the child was four months old, he had a severe fever that required infusion at the local county hospital. The needle used for the infusion caused blood to percolate and triggered the formation of a large hematoma. Doctors at the hospital were unable to figure out what went wrong and didn’t know how to handle it. That same night, an emergency ambulance took my child to a city hospital for further checkup and treatment. When the test results came out, it broke my heart and the plans I had for my child.
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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. Pengpeng was born with a hematoncus on his head. At first we didn’t take it seriously, since we never thought it would be a bane to Pengpeng. Years later, Pengpeng became a primary student. He loved school very much, and he always talked about his friends and teachers when he had to stay at home as he needed medical treatment for the hemophilia. Things always turned us down. Pengpeng often suffered from bruises or hematoncus, and he had to ask for sick leave frequently. He always asked me, "Dad, when can I get to school?" Sometimes, when Pengpeng was alone, he even blamed himself with tears in his eyes, "Why can’t I be as healthy as others and go to school with my friends?" At the sight of it, I felt heartbroken. How I wish I could replace him to suffer his disease! In 2010, Pengpeng went to junior high school, and we were happy for him. Fortune is fickle, however, as Pengpeng fell down and broke his leg after it snowed. We hurriedly took him to the hospital, and the doctor said that due to Pengpeng's condition, the operation success rate would only be about 40%. We could not decide whether to continue with surgery, as Pengpeng said to me, "I want to do it, Dad, I want to stand up by myself. I know it is dangerous, but if I really fail during the surgery, please don't feel sorry for me; you will live a better life without me, and you won't have to worry about money or take care of me anymore..." At that moment, we all cried, and I could never forget that day. As Pengpeng insisted, doctors decided to choose operation for him eventually. From the moment Pengpeng was taken into the OR, a blow of unprecedented fear inundated me. I prayed for God to save his life during his surgery. Fortunately, surgery was successful, but it will still take some time for Pengpeng to stand up by himself. He had to quit from school temporarily, but we still believe that he can stand on his own feet in the near future, and we will wait for a happy ending. Original article was written by Zheng Liu, translated by Shishi Ma, and edited by US interns Emily Cheng and Kevin Mo.
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.
We live in a remote, impoverished small town. On September 11, 2009, we were all happy to have a little boy, Qiqi. Since then, the family was careful and tentative to take care of him and glad to see him growing up quickly. When Qiqi was eight months old, he always had bruises. We took him to many hospitals in the town but got nothing. A doctor said that it might be due to hemophilia, and he suggested us to do an examination in a better hospital in the bigger cities. We then went to Chengdu to seek for answer; a few days later, we got the result: Qiqi was diagnosed as type A hemophilia. Undoubtedly, it was a bold from the blue for our poor family. Anyway, we knew we had to seek any method to cure this cute boy. As our family condition is very poor, we couldn't afford coagulation factors. Every time Qiqi got bruised in his knees, he had to suffer pain all the time. As Qiqi had a lack of due treatment, his knees were bruised seriously and couldn't even walk for some time. In 2012 we went for a lecture held in Chengdu by the Hemophilia Home in Sichuan, and people from it told us that the Beijing Xiehe Hospital could treat hemophilia. We applied for loans from a bank and took our child to Beijing for curing methods. Now Qiqi is under good treatment and we encountered members from the Hemophilia Home of China. They told us that we could apply for the Ocean Heaven Aiding Project, which gave us new hope for curing Qiqi and lead him back to a normal life. We really hope our child can be cured and live happily forever, and we also sincerely thank people who are selflessly devoted to help hemophilia patients. Original article was written by the Zheng Liu, translated by Shishi Ma, and edited by US interns Emily Cheng and Kevin Mo. 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 name is Xiaodi and I am 14-years-old now; my family and I live in Chenzhai Ziran Village, Taihe county, Anhui province. I have two older sisters, and they take very good care of me. Though our family was not rich, we were very happy. However, since I was diagnosed with hemophilia, our condition collapsed into misery. My parents used every penny to find cures for my disease, and my two sisters dropped out of school to earn money for my treatment. At the thought of their willingness to help me, I burst into tears. My parents are temporary workers at a nearby brickyard. Every night they come back exhausted with dust coating their faces. How difficult their work must be! I always feel sad when I see their tired faces. In order to treat my hemophilia, our family gave our every penny and borrowed money from friends and relatives as they could. But now we really have no idea where to get more money for my treatment. Please help me! Please help our family! Original article was written by Zheng Liu, translated by Shishi Ma, and edited by US interns Lauren Kam and Ally Nguyen. 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. On March 30, 2001, my little boy, Xiaofan, came into this world. We were all very happy to have such a cute boy. However, as he grew up, something strange would always occur: Xiaofan always fell down as he tried to walk. Unlike those of the other children at his age, his bruises and swelling took a much longer time to go down. At first, doctors said it was due to a capillary problem and would be fine as Xiaofan grew up. Later, though, Xiaofan complained that his ankles hurt, and when we took him to see a doctor again, he was diagnosed with chronic periostitis and required much rest. We didn’t take it seriously until 2006, when Xiaofan got a fracture that refused to heal. We took him to Jiangxi Children’s Hospital, and unfortunately, Xiaofan was diagnosed with hemophilia. Since we were not aware that Xiaofan had hemophilia during his rehabilitation period, he didn’t receive Factor VIII on time, which led to frequent bleeding. In 2011, we had to take him for synovectomy in Beijing. Xiaofan got well after the surgery, but his condition relapsed this year. Because local hospitals have no Factor VIII, we had to buy them from pharmaceutical agents with much higher costs. How we hoped we could get factors from the local hospital so that our medical insurance could afford them! We really hope national medical policies will improve so that we can have more resources to help Xiaofan as well as other hemophilia patients. Original Article written by Zheng Liu, translated by Shi Shi Ma, edited by US interns Lauren Kam and Ally Nguyen.
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.
There is good news: China Hemophilia Home has become a new cooperative partner of Transparent Fish. We encourage the China Hemophilia Home Community to pay attention to our new partner at http://www.toumingyu.org/group.php?group_id=369 The Hemophilia Home of China is a non-profit organization founded in September of 2000 under the care and support of Hematology Institute of Chinese Academy of Medical Sciences. All the staff is comprised of volunteers who care about hemophilia cause. We sincerely hope our cooperation will promote China Hemophilia Home to provide more and better service for hemophilic patients. Congratulations to China Hemophilia Home. At the same time, I, on behalf of Transparent Fish, express our appreciation to all organizations. Thank you for your cooperation and support. I’m so glad that we have a common philosophy and understanding. I expect to have further interaction with you. Moreover, I hope more organizations will join us and expand our non-profit career. Original article by Nancy Nguyen, translated by Shishi Ma, and edited by US interns Isabel Auyeung and Ally Nguyen. Hemophilia Home of China, founded in September in 2009, in an NGO that provides treatment and financial aid for hemophiliac patients. If children with hemophilia can receive early intervention, many of them can enjoy the same health as normal children. Unfortunately, hemophilia treatment is extremely expensive; many families, especially rural families, cannot afford treatment for children. To learn more about Hemophilia Home of China, click here.
Yesterday afternoon at 2 PM, I went to the Beijing Children’s Hospital to check on Little Shou Hao who was recently supported by Hemophilia Home of China. I only spend about 30 minutes on the road and reached the hospital quickly. I contacted Hemophilia Home of China’s employee Yin Lu, and we went to the ICU where Little Shou Hao was staying. There was a time limit, so Yin Lu went into the room and got some pictures of Little Shou Hao and his mother, and talked discussed his surgery with the doctor. The doctor said he still needed to do the infusion with postoperative care. I heard from the doctor that Little Shou Hao’s mother would come to the hospital gate every early morning and wait for to see her child, no matter whether she was able to see him or not, she would be there all the time, every day the same, and would leave once he had gone to sleep. It really made me feel the mother's love for her own child, it was very touching. After that, I went to visit Little Shou Hao, and he called me “big brother.” His mother told me that before, he could not even speak full sentences and was only be able to say papa or mama, but after the surgery, his speech has been very clear and lucid. It appears that his surgery was a successful one! I had simple chat with his mother as well. Those nurses are kept telling me that the time limit was over, (they are quite ferocious, but I understand they are just doing their job), so I took few pictures with Little Shou Hao and his mother, introduced Little Red Scarf and Toumingyu, gave them two masks and informed them about the seriousness of air pollution in Beijing. They seemed very happy. The visit made me feel that the support of the our non-profit was greatly helpful, and feel the greatness of maternal love, and realize there are many more children that need us to care and love! Little Shou Hao's smile left a deep impression on me. Original Article written and translated by Shishi Ma, edited by intern Kaitlyn Cheung. |
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