When Liu Jijun was diagnosed with amyotrophic lateral sclerosis (ALS) in 2004, doctors predicted he might live three to five years. Nineteen years later, his story – written through unwavering care and innovation – has become a beacon of hope for thousands across the Chinese mainland.
ALS, often called Lou Gehrig’s disease, attacks nerve cells controlling voluntary muscles. By 2008, Liu had lost his ability to walk, speak, and eat independently. His wife, Wang Jinhuan, transformed from a novice caregiver into a medical expert, mastering tracheostomy care and rehabilitation techniques through self-study. "I couldn’t even pronounce 'amyotrophic' at first," Wang recalls. "Now we’re writing manuals to help others."
Their collaboration with Peking University Third Hospital’s Professor Fan Dongsheng produced China’s first ALS rehabilitation guide. In 2010, they co-founded the Oriental Rain ALS Care Center (ORACC), the nation’s pioneering patient support organization. To date, ORACC has assisted over 4,000 families, providing free breathing masks and nutritional guidance while advocating for rare disease policies.
Childhood sweethearts who married at 23, Liu and Wang redefined commitment as the disease progressed. Wang’s daily routine includes 4 AM suctioning procedures and interpreting her husband’s eye-blinking communication. Yet their focus remains outward: "Every ALS patient is a warrior," Liu conveyed through a letter-board interview. "Our battle continues through those we help."
As China strengthens its healthcare system, stories like Liu and Wang’s highlight the human resilience shaping medical progress. Their next project? A memoir co-written character-by-character through eye movements – proving some loves grow stronger when tested.
