Gathering raises awareness of rare disease
Xia Zhengxing, a former actor who has been living with neuromuscular disease for over two decades, takes part in Monday's event.
Patients with neuromuscular disease took part in the 16th annual NMD and Amyotrophic Lateral Sclerosis (Lou Gehrig's disease) Day in Shanghai on Monday to raise awareness of the incurable conditions and thank the good Samaritans who help them.
It's estimated there are about 50,000 such patients in Shanghai.
One of those taking part was Xia Zhengxing, a former actor who has been living with the disease for over two decades.
He was diagnosed with the disease at the height of his career and forced to retire as it progressed. Patients usually find more and more of their body parts becoming immovable as time goes by.
"My daughter gave me power and courage to go down this road, and I know the day will come when I give her hands to a man who will bring her lifelong happiness," Xia said.
Taking part in the event for the first time, Xia was impressed with the services of Qiansheng Taxi, which has a fleet of 200 accessible taxis for disabled people.
"Due to some miscommunication, the driver came early for me today when I was not ready, but he was very patient and his service was very good," he said.
Various companies sponsored the event and supported the patients with monetary and material donations, and experts in the disease gave talks.
A group of students from Xidian University in Xi'an in Shaanxi Province, presented their latest model of a wheelchair which users can control with their eye movements.
The event was organized by the Neuro-Muscular Disease Association of China (MDA China).
Zhu Changqing, its founder and president, said this special group of patients were gathering more and more support from society and the authorities over the years.
"Through the annual event, we hope more people will get to know those patients and their needs and bring to them love and hope," she said.
The organization strives to make medicines more accessible and affordable and to have the government extend its allowances to disabled patients.
A student from Xidian University (right) shows a patient how to control a wheelchair with his eye movements.
