Narrated by Tu Bo-yu
Compiled by Zhang Li-yun
Translated by Wu Hsiao-ting
Photo by Li Yan-shu
In less than a year, my life was turned upside down—I went from full of vitality to half-paralyzed. When all treatments failed, Hualien Tzu Chi Hospital offered me a glimmer of hope.
I was once a healthy, active young man who loved playing basketball. But in 2021, at just 21 years old, I began to experience frequent falls. Initially, I attributed it to fatigue, believing a good night’s sleep would restore my energy. However, I soon found myself growing tired more easily, stumbling as if I were drunk. I also began losing control of my bladder and bowels. Once, while out on a business errand, I had a sudden urge to use the restroom but lost control halfway there. At other times, I felt an urgent need to urinate but couldn’t. Eventually, I could barely stand for more than three minutes at a time. Even getting up required immense effort. The doctors kept saying, “You need further observation.”
Frustrated by the lack of answers, I underwent tests at a local hospital in central Taiwan, where doctors suspected I had a rare hereditary disease. I was referred to a medical center in northern Taiwan, and genetic testing confirmed that I had adrenoleukodystrophy—the same rare genetic disease depicted in the movie Lorenzo’s Oil. The doctor looked at my genetic report and frowned; at that time, no established treatment protocols existed in the medical literature for the disease.
My condition deteriorated rapidly. In less than a year, I went from being able to run and jump to walking slowly, then needing a walker, and ultimately becoming half-paralyzed. During a family trip, while soaking my feet in a hot spring, I realized I couldn’t feel the heat, leading to burns and blisters on my feet. From that point on, I was mostly bedridden, which resulted in severe blood clots in my right leg. This, along with cellulitis, caused my leg to swell so badly that I required hospitalization.
One day, while my mother was massaging me, I suddenly felt tightness in my chest, as if my heart were being squeezed. I lost consciousness. When I woke up, I was surrounded by doctors and nurses trying to save my life. I had suffered a severe pulmonary embolism. Fearing that the embolism might spread to my heart, the doctors transferred me to the intensive care unit for observation. They eventually decided to proceed with a hematopoietic stem cell transplant. Fortunately, a matching donor was found through Tzu Chi’s bone marrow registry, and I underwent the transplant in March 2023.
Truth be told, I was at my breaking point before the transplant and wanted to give up. The cost of long-term treatment was overwhelming, and I didn’t want to burden my family any further. But before the procedure, my donor wrote me a card wishing me a speedy recovery. I drew strength from the love I felt and decided to keep fighting.
Although my body did not reject the transplant and my red and white blood cell counts improved—much to the nurses’ surprise—my condition remained unchanged. The doctors had no answers. After all this effort, it felt like I was standing at the edge of an abyss I couldn’t cross. I felt hopeless and had an honest conversation with my mother about my situation. I told her we had tried our best, and if my condition didn’t improve, we should let nature take its course and stop treatment rather than prolong my suffering.
Just when I was about to give up, a friend came across a report on the integration of Western and traditional Chinese medical treatments at Hualien Tzu Chi Hospital. This rekindled a glimmer of hope, and we decided to give it another try. In March 2024, I was admitted to the hospital, where I received endogenous stem cell therapy along with acupuncture and herbal treatments from Superintendent Lin Shinn-rong and Vice Superintendent Ho Tsung-jung. After seven treatment sessions over about six months, I could clearly feel my body improving. Although I still can’t move my lower body, I can now move around in bed, sit up, and turn over like a normal person. My lower back is also stronger. I previously had no sensation below my chest, but now I’m regaining feeling in my thighs. My bladder and bowel functions have returned to normal and my appetite has improved.
Although progress has been slow and incremental, it feels wonderful to be constantly improving. I look forward to the day when I can return to a normal life!
