Early at 5:00 am on December 15, patient volunteers got up from their beds and went to participate in the educational activity held by Aili. TFish helped provided us with a free vehicle and helped us to move our propaganda materials. Photography was provided for free by Song Cheng who comes from the Shenzhen Office of China Public Welfare Photography Association. Everyone was ready for the activity.  Myasthenia Gravis is nervous system disease that is clear and reversible. The patients who have recovered from this disorder participated in the activity. They wanted to let people know that the illness is not formidable and our group is hopeful. 

At 8:30, the countdown began. Many participants from other NGOs were wearing our T-shirts and were ready to go. The runners would run to raise money for children in disaster areas hit by snow and for patients with myasthenia gravis who are cared for by Aili. 

With help from the One Foundation, the propaganda booths of Aili and the Rare Disease Care Center were organized at 9:00. Though simple, Aili won more attention. We used this opportunity to spread knowledge about myasthenia gravis to all the people around us. We gave many explanations to people who knew nothing or had misunderstanding the disease. Nothing can hinder our desire to eliminate misinformation about myasthenia gravis and other rare diseases. 

The organizations introduced the difficulties that the patients have to face, hoping to inspire the spirit of mutual help among the people present and hoping to let those suffering from these diseases know that they are not alone. We hope more people will begin to care about those wit rare diseases—transformation comes from understanding. 

Despite the rain and wind, our activity was held promptly at 10:30. Cheers could be heard for the runners, who completed the full distance and came back soaked. 

Original article written by Ji Liu, translated by Maggie Li, and edited by Yanyan Zhang

Aili Myasthenia Gravis Care Association is dedicated to caring and helping those that suffer from myasthenia gravis, an autoimmune neuromuscular disease that causes muscle weakness and fatigue.

Recently, the Aili Myasthenia Gravis Care Association received donations from a social enterprise. These donations are very special. They are non-hazard vegetables. Each week, we will receive a batch which weighs about 100-200 kilograms.

This is our first time accepting fresh products as a donation. After several days of discussion, we decided the distribution method. The vegetables were delivered to the office. The donating enterprise suggested we could ask the patients and our staff to take some of them. From November 27 to 28, 2013, the first batch of vegetables were distributed to 26 patients and staff. Each of them weighed 4.8 kilograms.

This is an important issue for grassroots organizations. We do not have much money and cannot afford to hire a large staff. Our office is very simple. We have to spend each penny wisely and economically. The founders of these organizations tend to be enthusiastic and brave and want to dedicate their time and energy to the cause. But with low pay and overloaded work, they have to bear a lot. In our organization, most of the staff are family members of the patients. They insist in speaking for vulnerable groups even though their living conditions are very poor. 

No matter whether they are staff patients or family members, everyone passes on their positive spirit and dedication. When they devote their time, they need to be understood and cared for. 

Thank you to this enterprise for their donation. The gave love not only to our patients but also to our staff. We will continue to spread this love because love makes us more powerful!

Original article written by Xiaohui Zhang, translated by Maggie Li, and edited by Yanyan Zhang

Ming Shi is my daughter. She was born on May 31, 2007. She brought the family a lot of joy. Then she got ill in 2008. She has been admitted to the hospital 4 times so far. She had surgery to install a pacemaker in 2010, which cost 60,000 RMB. The heart peacemaker has to be replaced every 8 years. Her illnesses has brought the family so much pain. 

On February 20, 2011, my son was born. I had to take care of 2 children and could not work. The whole family relies on the income of the children’s father, whose job is unfortunately unstable. The children’s grandparents are not able to help us due to poor health.  

Ming Shi is 7 and attends pre-school. She does well at school and takes medicine on time. She always asks me, “Mum, why aren't I getting better?” I am determined to treat my child no matter how hard this might be. The life of my child is my life. She will be better if we work together. I urge my child to study hard and become a doctor in the future.

We are an ordinary family with 4 people. We try our best and hope to change all of our misfortune. This is our story. 

Original article written by Xiaohui Zhang, translated by Maggie Li, and edited by Yanyan Zhang

Aili Myasthenia Gravis Association is dedicated to caring and helping those that suffer from myasthenia gravis, an autoimmune neuromuscular disease that causes muscle weakness and fatigue.

We come from an ordinary rural family. For a better life, we had to leave our children in our hometown and work in Guangdong. 

In January 2013, my mother told us my daughter's right eye had strabismus. We took her to the city hospital and the doctor prescribed medicine. After a week, her right eye could not open. We were scared and quit our jobs and took her to see doctors. We went to several hospitals and wrote a lot of checks. The results finally came out--myasthenia gravis.  I felt faint when I saw the result. I could not help weeping with a frustrated heart. It’s hard to image how I sustained my life in that period. 

Then I found helpful information on the internet. I went to Guangzhou with my daughter for treatment. Seeing people look at my daughter strangely made me feel pain in my heart. We went to the hospital for many tests. My daughter became fearful of strangers as a result of this experience and it took a long time for her cheerful personality to come back. We were anxious whenever we thought about the treatment. We hope children like our daughter can be supported and receive better treatment. We really thank the loving people that have helped us.

Original article written by Xiaohui Zhang, translated by Maggie Li and edited by Yanyan Zhang

Myasthenia Gravis Care Association is dedicated to caring and helping those that suffer from myasthenia gravis, an autoimmune neuromuscular disease that causes muscle weakness and fatigue.

I came to the city after graduating from a police training school. All I had were a quilt, a box, and a square stool. Symbolically, the song I liked then was titled "I Want to Have a Home." In particular, at around the time of the spring festival, I was anxious to have a home of my own. Later, I met my lovely and down-to-earth wife, and we got married and now have a lovely daughter.

As a policeman, I felt stressed at work. Irregular food and sleep made me feel tired constantly, but my health was an after-thought. In 2004, I began exhibiting symptoms such as drooping eyelids, double vision, and difficult swallowing. It was then that I was diagnosed with myasthenia gravis. My wife took me to see doctors in different places, trying hard to find me a cure. 

I underwent operations that brought me more pain; eventually I was unable to eat or excrete - a fate that felt worse than death. I even attempted suicide, but was rescued. Seeing my wife and daughter’s weeping faces, I decided to survive no matter how painful and difficult life was. I was hospitalized again and again, but my wife took care of me night after night. With her care and medical treatment, I was finally discharged from the hospital.

It has been 5 years, and my illness is stable and life has returned to normal. After years of torture, life, and death, I try hard to maintain a positive outlook. Though I am not able to offer a rich life for my wife, I hope to spend every day of my life with her safely and grow old together. People sometimes say, “One who survives a great disaster is destined to good fortunes forever after”. What is happiness? My thoughts are as such: watching a rising sun, breathing fresh air, drinking a glass of water, eating a red apple, helping my daughter with her school assignments, assisting my wife do housework, and sending greetings to my 80-year-old parents. All of these are happiness. I find my meaning of life not within me, but in my family members, friends, and other loved ones. Let’s live a happy life everyday.