In September 2007, I came to the university. I didn't expect a lung index to be "abnormal". I received a call, "Are you Guo Penghe? I am Tian Xiaomeng, we have to get the pneumonia vaccine together." So there are only two unlucky person in the class taking the bus to get the vaccine together. Gradually, I and Xiao Meng are getting more and more familiar. One day, he rode the red broken car and asked me to go out. Then he actually showed me! What! I didn't think about it, I refused. However, later, we are still together.
He always played games in the Internet cafe, or in the basketball court. Anyway, I couldn't find him. If he were not my first boy friend, I absolutely break with him! Then we graduated, and it was different. I started to live alone in Beijing, but my body was getting worse and worse. I was getting harder on the steps and taking the bus. Fortunately, every two weeks there is a train to Beijing, he will company me. On October 8, 2013, we married.
However in 2013, when we were back to Beijing from my homeland, I went to the toilet at the bus station. I suddenly couldn't get up. The car was going to open. Xiao Meng was getting more and more anxious. I felt that I had never been helpless and wronged like this time. In July 2014, I chose to go to the hospital for a comprehensive examination and finally confirmed the diagnosis of glycogen storage type II (also known as Pompe disease). For a moment, I actually felt very happy, and finally I knew the reason why I was different from others. After knowing the truth, it seems that Xiao Meng has become more considerate.
Actually I didn't really think too much about how to deal with this disease. Xiao Meng is very active, looking for disease information, joining the QQ group of patients. we met more friends like me. There are serious children here, they are accompanied by a ventilator soon after they are born. We also learned that foreign countries have developed special effects drugs for Pompe disease, and they have been listed in China. However, the annual cost of about 3 million yuan.
2016 is our most desperate and helpless year. I was pregnant. The first thought was that I want to give birth to the baby and let him have a companion in the future. From doctor to family to Xiao Meng, everyone was against it. I went to find some examples of successful births. They finally chose to respect me. We rushed to the major hospitals and did a lot of inspections. Xiao Meng stayed in the queue and hanged the expert number. There was no doctor helping us to keep this child. Just because I am a Pompe disease patient. In the end, the child could not keep it.
In the same year, my brother was diagnosed with Pompe disease. My parents were older with more white hair and more wrinkles. The corners of his eyes were always red. I think maybe I should do more for myself and my patients, but I am so weak. Xiao Meng told me,"Be happy, do what you want to do, I support you!" With his encouragement, I devoted myself to the related work of the Pompe disease organization. Actively participate in rare disease public welfare training or conferences.
Maybe God heard our call to the child. In early 2019, I was pleasantly surprised to find that I was pregnant again. I thought that this time I must work hard with the little baby to be the best mother in the world! I told the doctor about the good news of pregnancy. The doctors in mainland China worried about my body because I didn't use medicine. I didn't accept the recommendation leaving a child. The doctor in Taiwan expressed blessing to me for the first time and encouraged me to give birth to a baby. Now that I have been pregnant for 3 months, I can feel the baby growing in my uterus every day. I want this baby could see this beautiful world, so no matter how hard it is.
China Pompe Care Center
China Pompe Care Center was established in July 2011 by Pompe patients and their families. It is a non-profit organization engaged in public welfare and non-profit social work. It is committed to providing service, assistance, emotional care for patients and their families, improving social awareness, promoting social understanding, and helping patients get the right to medical insurance and social services.
Website: http://pompe.org.cn/
E-mail: public@pompe. org. cn
