Hemophilia Home of China: Never Stops Haunting Us!

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. In this article, Zheng Liu tells us about Xiaoyi, a boy who is constantly fighting hemophilia.

Xiaoyi was born on June 5th, 2003. No one ever expected that there would be a tragedy after seven months of happy times. Xiaoyi injured his lips and bled heavily, so we took him to the hospital to stop it. However, he started bleeding again when his mother was feeding him. This time, things were worse. Xiaoyi was diagnosed with hemophilia so the doctor suggested that we should  bring him to the Chengdu Huaxi Hospital for further examination. The doctor also taught us more about hemophilia and we were shocked how our baby had been diagnosed with such a terrible disease.

After several months had passed, Xiaoyi’s legs began to swell and was diagnosed with hemophilia A type. Again in 2004, Xiaoyi’s legs swelled again. This time we took him to the 2nd affiliated hospital of Huaxi, and we now had to take him to the hospital twice a year. Just when we were able to pay off all the medical fees, Xiaoyi would have another stroke and we would have to take him to the hospital again.

In 2008, Xiaoyi began attending kindergarten. Even then, he would vomit anything he ate. After the radioscopy, doctor said Xiaoyi had intracranial hemorrhage, so he must transfer coagulation factor immediately. Since there were no domestic-made factors, we had to pay more for the imported ones. In order to take care of Xiaoyi, his mother had to quit her job. It was a great burden for an average family, so we had been dragged to a worse situation.

The year 2010 was an unforgettable one. On March 21st of 2010, Xiaoyi had an intracranial hemorrhage again with a seizure, and then he fell into a coma. After the two hour drive, the unconscious Xiaoyi had been sent to the emergency room. With the help of the doctors, Xiaoyi survived eventually.

Since 2011 however, Xiaoyi suffered from serious congestion in his legs and he could not stand still until  now. We made every effort to borrow money to cure the disease, but things just got worse. The whole family anchored in a dilemma: we had no money, nor efforts to face the new situation while they kept coming all the way. What should we do? When could we end this battle successfully?


Original article written by Zheng Liu, translated by ShiShi Ma, and edited by US Interns Lauren Kam and Kevin Mo.