New Born

My name is Guo Penghe. When I was young, my physical education class never passed. When my friends were happy to dance rubber bands and kick sandbags, I could only look far away. I thought that one day, I can run like them, running very fast, jumping very High... I am very puzzled, why am I different from others? Until 2014 I was diagnosed with glycogen storage type II (Pompe disease). But the story I want to share must start from just getting into college.

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.

Pompe in my life

My name is Guo Pengfei, 35 years old, a Pompe disease patient in Hebei province, China. “Pengfei” means bright future. I grow up in the countryside, realizing that the life is tough for the rural people. I wanted to change my life.

Because I didn’t know that I had a rare disease when I was a child, I just feel that I am always weaker than my peers, and the one who was bullied in the children. My living condition was bad, I couldn’t eat meat even once a month. I remember that the first time I ate banana, it seemed to be the fifth and sixth grades. When I was in my teens, I want to make money by myself. So in the hottest summer, I went to the cornfield to dig wild herbs. I climbed trees to collect cicadas to sell. I felt that I had to work on my own hands. In the busy season, I have to cook at home and wait for my parents to come back from the field.

I still have social value!

My name is Gong Xuemin. I am 32 years old. I am a nurse, a Pompe patient. I have been working in clinical work for 8 years. In these 8 years, I hold the principle that all patients deserve best treatment. I thought that I would always work like this in my life.

However, the reality is cruel. In 2017, I was diagnosed with Pompe disease, a disease that affects the whole body muscles and multiple organs because of the accumulation of glycogen. It is a rare disease. Since the onset of the disease, I went to the hospital of county, city, province, capital, finally diagnosed. During this process, the whole family has suffered, facing the misdiagnosis of the doctor, the critically ill notice, making my whole family bleak. On the day when I was diagnosed with a rare disease, my family were heavily in debt. Soon after, my brother was also diagnosed with Pompe disease, and the whole family fell into sorrow. This is not the end, but it is the beginning of another challenge. I am weaker and weaker every day, I can’t run, can't breathe at night, even sleep with the ventilator. Can’t lift my legs, can’t climb the stairs...... but I do not give up hope for life, I want to be strong.

Together, we are stronger!

My name is Li Wenwen, I have 5 young brothers and sisters, and come from a family of Pompe's patients in Jining, Shandong, China. In 2011, 3 of 5 family members were found to have Pompe disease, which is unfamiliar to many people, including doctors and experts. It is like a curse. Let us become weaker and weaker. Pompe's disease have efficient medicine, but it is too expensive. We and most patients only wait to die!

The curse has never disappeared. My parents spent all their savings in order to take care of  us and owe more than 400,000 debt. From diagnosis to now, my family lost a lot but also realized a lot. The suffering of life does not let us give up but let us become more and more brave. We accepted the challenge that God gave us. Beginning with the fear of this disease to understanding; and then to fight with this disease every day; our body changes all the time. Our muscles are weak, we no longer walk and jump normally; we don't breathe big breath; we can't go up the stairs; we can't bend up......our body is obviously degraded in 8 years. The functions of various organs of the body have gradually weakened. We don't have the strength to breathe, and we are accompanied by 3 ventilators every day. A lot of things that people treat it as normal, but are impossible for us!