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!
We want to take medicine! If we can take medicine, we can completely restore normal life. We can also take care of our elderly parents, take care of our children, and continue to work as a kindergarten teacher to Reward those friends and good people who have helped us.
The life-saving medicine Myozyme was listed in China in 2017, and was included in the first rare disease list in China in 2018. It seemed like that we have hope. But no, we continue to suffer! Only a small number of infants can use Myozyme because doctors tell their parents that it is difficult for children to live to 2 years old without medication. A small cold pneumonia may kill them. A hospitalization may cause them to go bankrupt. In order to save their lives, they have to reluctantly use drugs, and the high medical expenses forced them to sell car to sell their house! We have lost many young patients in a few years. We have complained countless times about the unfairness of God. There are many post-graduated students, some studying abroad, as well as doctors and teachers and many ordinary workers in our community. If we can choose to die to solve all problems, we may not live in the world. Death, closing your eyes, not suffering from illness, no more ridicule and irony, no more inexplicable eyes, this may be a relief for us. But what about our parents? Maybe we still have something to do with the good things in this world, and we have dreams to realize. We should hold the hope. In the evening, we secretly tear, and when it is dawn, we will smile and live alive.
"Together, we are stronger!" We took our "big nose" ventilator and shouted with our patients in the wheelchair to fight for hope of living. There is no strangeness and no irony between our patients. Because we are all the same. We have a common home "China Pompe Care Center". through this Center, We have met more doctors and experts who have been working hard for rare patients. We are no longer a lonely person. Struggle for hope and right to survive. We have our own values and use legal channels to fight for the life. We hope that through the efforts of our patient group, our future will be better! It is hoped that the country will open a green channel for patients with rare diseases, and it will be a medical treatment policy for rare diseases, so that we can use the medicine!
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
