People with rare diseases are often represented through medical labels and vulnerability narratives. Osteogenesis imperfecta (OI), called "porcelain doll disease," is easily reduced to fragility, dependence, and incapacity. Charity-centered communication may attract attention but obscure aspirations, preferences, creativity. This case study explores how life narrative and artistic self-expression can reconstruct public perceptions of young people with OI. It focuses on "Mannie Group," a five-member female research and creative group formed on July 30, 2026, around Wang Mannie, a young woman with OI. Data include a semi-structured interview, field observation, informal conversations, and a participatory fashion show held on August 4, 2026, in Guangzhou, with about 100 audience members. Analysis covers Mannie's life narrative, experiences, self-expression, clothing preferences, mobility, and symbolic elements including clothing style, purple color, wing imagery, music, and the slogan "肆意的曼妮是曼妮."("Mannie in her fullest expression is simply Mannie") Findings show a gap between attention and understanding. Mannie's story challenges reductionist representation. The fashion show turned the body from a medical object into a medium of self-expression, with aesthetic choices based on Mannie's own ideas. Narrative empowerment can replace pity- and charity-centered images with recognition, equality, and appreciation, but artistic expression alone cannot remove structural barriers. It must be part of broader social and institutional empowerment.