The rare disease clinic at Peking Union Medical College Hospital was particularly busy that day. In the corner of the waiting area, I noticed a couple in their early 30s - the young husband sat hunched over in a chair, with a pale face and dark red ulcerated wounds on his cheeks and forehead; My wife stood aside, holding a stack of medical records in her hand. I walked up and asked, "Hello, I am a medical social worker from the hospital. How can I help you?" My wife looked up with a hint of hesitation in her eyes and whispered, "We are from Gansu and have been ill for 12 years without a diagnosis." It turned out that her husband's name was Zhao Jiafei and her son's name was Liang Qingqing. More than a decade ago, Zhao Jiafei was a robust 24-year-old boy until he was repeatedly knocked down by high fever, pneumonia, and skin ulcers. They ran to hospitals in the northwest, but doctors shook their heads and said, 'We can't find the cause.' They had to use antibiotics repeatedly to barely suppress the infection. At its worst, he couldn't even swallow water. From the mouth to the throat, it was so ulcerated that I couldn't even take a bite of food. I had to rely on a small amount of liquid food to barely survive, losing dozens of pounds. Due to joint swelling, one leg is completely unable to walk. ”Liang Qingqing's voice trembled slightly. I have long heard that the Rare Disease Medicine Department of Peking Union Medical College Hospital is an authority in the treatment of rare diseases. This visit to Beijing is their last attempt. When they first arrived in this unfamiliar city, they stayed in the cheapest hotel. The humid environment worsened Zhao Jiafei's lung infection until they encountered the rare disease team at Peking Union Medical College Hospital. The doctor didn't rush to prescribe medication, but spent a whole hour carefully inquiring about medical history and reviewing every old report. Liang Qingqing said that it was the first time in 10 years that a doctor had told them, 'Don't worry, let's slowly find the cause.' After evaluating their predicament, I immediately contacted the Tongxin Circle Union's' Love Home 'project - a public welfare resource that provides free temporary accommodation for impoverished patients. When I informed Liang Qingqing of the accommodation arrangements, she choked up and said, 'I never thought I could have a' home 'in Beijing.' Although the 'Love Home' room is not large, it is clean and warm. After staying overnight, Zhao Jiafei said, "This place is really nice. I slept soundly for the past few months last night." In the following days, I assisted in applying for medical assistance, coordinated multidisciplinary consultations and hospitalizations, and contacted rare disease public welfare organizations. After waiting for more than 10 days, the cause of Zhao Jiafei finally became clear - congenital immunoglobulin deficiency, an extremely rare immunodeficiency disease. Although the treatment is still lengthy, with precise diagnosis and medication, his infection has gradually been brought under control. Not long ago, during a visit to the rare disease ward, I saw them video chatting with their 4-year-old daughter. The child said, "Dad, come home quickly." Zhao Jiafei smiled and agreed, but after hanging up, she secretly wiped away her tears. Liang Qingqing said, "I used to be afraid that I couldn't hold on, but now... we want to watch our daughter grow up." In my more than 10 years of career as a medical social worker, I have seen too many hardships in life, but I have also witnessed countless resilience like Zhao Jiafei's family. Disease may destroy a person's immune system, but it cannot destroy love, dignity, and hope. Every time I see their backs, I remember the saying: "Medicine heals the body, while warmth heals life." On this road to fighting rare diseases, they have more companions. We may not be able to rewrite the script of fate, but at least we can make every struggling journey less lonely and more light. (New Society)