I was born in a well-off family, my father is a businessman, and my mother comes from a big family of knowledge, book and courtesy. There are 6 brothers and sisters in the family, and I rank 5th. A home that seemed to be beautiful, but it was overcome by a disease. This disease is called cerebellar atrophy.
When I was about 6 years old, my father was in his 40s. He suddenly became ill. He stumbled while walking. He had to walk around with tables and chairs at home, like a spider. After that, he couldn't control his voice. We always felt that he was talking violently. Gradually, no one talked to him anymore. Later, I had difficulty writing and speaking more vaguely, and the business ended. He sat on the chair in silence by himself, and died at the age of 60. When he passed away, the doctor said he was suffering from depression. This is the early 1960s.
Unfortunately, when my father passed away, it was unknown why. My mother died of tuberculosis when I was 12 years old, leaving my brothers and sisters to depend on each other. Unexpectedly, the eldest brother and the second sister walked unbalanced like their father in their 40s, and we realized that this is a genetic disease. Later, a friend of his eldest brother worked as a doctor in Taiwan. After learning about his symptoms, he came to Taiwan for an examination, and he was diagnosed with cerebellar atrophy. This is the 1980s.
Then the third and fourth elder brothers also became ill. How is it good to be born? I once complained why there are so many sufferings in life, but I said to myself: You can live happily even if you are sick. This slightly naive and optimistic personality may originate from my mother. She always gritted her teeth and carried away all the sorrows. Although she had no money at home, she still had the pleasure of setting up lanterns on the Mid-Autumn Festival and wrapping some small rice dumplings on the May Festival, which made our little ones very happy. Although the sick brothers and sisters do not laugh, they do not often sigh, and they are very wise to face life problems and try their best to take care of themselves. For example, if the fingers are not flexible, the second sister tied a rope next to the cabinet. Convenient to open the closet by yourself, good! Good! This is the end of the last century.
But I was still unwilling to stay at home for patients with disease. Then in 2003, I learned from the newspaper that an organization for patients with cerebellar atrophy had been established in Taiwan. I immediately contacted the other party and was invited to take my third brother to the local area for an examination and visit the Chinese cerebellar atrophy. Patient Association. I was just 48 years old that year, because at that time our family could not determine what model it belonged to. In other words, we didn't know where the DNA was wrong, so family members who did not have the disease could not pre-check whether they were inherited. In this way, I decided to resign my chair at the university and organize a mutual aid organization for patients with cerebellar atrophy. This is also a beautiful dream. When I returned to reality, I knew nothing and had nothing, so I first became a disease group under another patient’s association to learn from experience. Then in 2006, I started to organize the "Hong Kong Cerebellum" Atrophy Association" was formally established in 2007.
Dreams come true-patients with cerebellar atrophy and their families can really display the spirit of self-help and mutual help, face up to their own life and emotional problems caused by their patients, and are willing to stand up to let the public know about this disease, which has improved the medical and scientific communities' understanding of this disease. Disease concern. In a blink of an eye, the association has been established for 12 years. If you want to know more about us, please visit our website https://www.hkscaa.org. As long as you enter the Heart Song Collection, you can see the powerpoint of "Review and Prospect of the 10th Anniversary of the Association’s Founding" . If you want to read the text, please read: "This is how we came-the growth path of SCAA".
In 2018, I was fortunate to receive the Hong Kong Humanitarian Year Award. On the awards table, I wrote: There is light in the dark, and it depends on You. Praise the winners bluntly for lighting up the lives of others. However, in my opinion, "humanitarian spirit is feasible for everyone." In my patient association, many members encourage and support each other, share difficulties with each other, and can also bring back the gloomy life of each other. So when others congratulate me, my response is: ordinary people do ordinary things, that's all.
Since its founding, difficulties are inevitable. In addition to the cumbersome coordination of affairs, there may be difficult things and difficult people. Makes me feel helpless, helpless, and powerless. At that moment, he was so gloomy, how could he illuminate others? At this time, I will calm down and read what Mother Teresa wrote in Kolkata Children’s Home Xishu. The sign on the wall of Baman: "If you do good deeds, people will say you are selfish and have ulterior motives; people do need help, but if you help them, you may be attacked; give the best things you have to the world , You may be kicked out of your teeth.” This is equivalent to the Chinese saying that “good intentions are not rewarded”. Therefore, many people, in order to avoid injury, have an attitude of holding each family's own way of life, and they are happy and happy. However, Mother Teresa said, "No matter what, you must do good deeds; No matter what, you must help; No matter what, you must give the best things you have to the world." This is what the Bible has always reminded us of dealing with people. The heart of Christ must be the heart. What kind of heart is the heart of Christ? A pastor said that three hearts must be maintained: a humble heart, a servant heart, and a obedience heart. Therefore, Mother Teresa believes that even if she encounters any difficulties and setbacks, she must persevere and light up the lives of others. She said, "After all, it is a matter between you and God; it is never a matter between you and others."
In the past, I had scolded Heavenly Father for suffering, but step by step, he let me know more about his love and unstoppable leadership. In the Bible, the Father promised: "You should have no worries, as long as you tell God what you want through prayer, supplication, and thanksgiving in everything. The peace of God that surpasses all expectations will guard your hearts and minds in Christ Jesus. "My experience is true. I believe that spiritual growth is the only solution to bring hope to every patient. Compared with the helplessness of "seeing through everything," Christ's salvation allows people not only to face the sick, but also to have passion in their hearts. Not only is peace but also joy, it is a belief that grace is sufficient for me. That’s why I set up a "Joyful Mutual Aid Group" for the patients. Once a month, I meet in a fellowship group and invite pastors to share with the patients.
I remember a patient who was nearly 40 years old. His wife left and his son didn’t want him. He thought he would be warmed by remarrying, but he didn’t expect the second wife to leave, so he could only go to the nursing home by himself, and he always felt life. It's really bitter. Later he joined the joy group, and became a believer and was baptized. Once he was seriously ill. When I went to visit him, I said to him, "Although you have lost a lot of things, you have got the most precious thing." He was very weak. He nodded and smiled slightly and said, "Because of this disease, let I know God and I am no longer afraid of facing death or the suffering in life." The joyful smile is now vividly visible.
Until 2014, Professor Chen Haoran of the Chinese University of Hong Kong finally found out the genetic pathogenic gene of the family for us after several hardships, named Spinocerebellar Atrophy Type 40, and I was certified as a non-causal person.
Although I was able to escape cerebellar atrophy, I was diagnosed with Parkinson's disease in 2016, which is a bit of a surprise. I remember that Dr. Liu Guoguang, who was diagnosed with me, said to me earnestly at the time: "This trick is better than that." We laughed at each other in an instant. As a result, I left the consulting room easily. In the past few years, I have still devoted myself fully to the work of the Cerebellar Association, and I also have to take care of the "Hong Kong Rare Disease Alliance" established in 2015 with a group of patients and their families. This is an organization based on policy initiatives. Of course, the health is getting worse, and the conference affairs are handed over to the successor step by step!
Now I have another dream, that is, I hope that cerebellar atrophy can be cured in the near future. At present, Professor Chen Haoran of the Hong Kong School of Chinese Literature and Life Sciences is entering the stage of drug research and development. It is urgently needed for patients to join the disease list to obtain more information and data. At the same time, it is also necessary to raise funds to continue research. For details, please refer to the "Rare Neurodegenerative Disease Research Alliance (NRND)" website www.bch.cuhk.edu.hk/NRND.
Can dreams come true? It really takes patients, researchers, and the general public to work together for a long time to make a beautiful fruit!
No matter what, you have to do good deeds; no matter what, you have to help; no matter what, you have to dedicate the best things you have to the world.