What does it take to outlast one of the most relentless diseases on earth? When Liu Jijun was diagnosed with amyotrophic lateral sclerosis (ALS) 19 years ago, he faced average odds of three to five years to live. Today, he is still here – a testament to resilience, innovation, and unwavering love.
ALS is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord. Within just 3.5 years of his diagnosis, Liu lost his ability to eat, walk, and speak. A tracheostomy procedure made breathing possible, but care shifted into the hands of his teenage sweetheart and now wife, Wang Jinhuan.
Initially unfamiliar with ALS, Wang dove headfirst into learning everything about the disease. Through self-study and hands-on experience, she became as skilled as a professional nurse. Together, Liu and Wang launched the Chinese mainland's first ALS patient organization: the Oriental Rain ALS Care Center (ORACC).
Their pioneering work did not stop there. Partnering with Professor Fan Dongsheng, a leading ALS treatment expert, they co-authored the Chinese mainland's first ALS rehabilitation manual. This guide offers practical advice on everything from nutrition to respiratory support, empowering patients and caregivers nationwide.
More than 4,000 ALS patients have now received support through ORACC, and thousands of families have found renewed hope. Liu and Wang's story shows how grassroots activism, data-driven insights, and deep human connection can rewrite the narrative around rare diseases.
As ALS research accelerates worldwide, the couple's journey lights a path for thought leaders, entrepreneurs, and changemakers looking to make a real-world impact. Their everyday heroism reminds us that with the right community and resources, no challenge is insurmountable.
Reference(s):
cgtn.com
