The Internet and social media platforms in China and around the world have recently been inundated with photos and videos of people performing the Ice Bucket Challenge, which asks participants to dump a bucket of ice cold water on their head. The viral campaign aims to generate awareness and raise research money for ALS, a progressive neuro-degenerative disease that often renders patients immobile.

Thanks to celebrity appearances and support, donations have been pouring in. But more importantly, people are finally taking a look at the rare disease. CCTV paid a visit to one ALS patient in east China's Jiangsu province to give you a closer look at the disease's impact.

For many Chinese, their first time hearing about ALS came after celebrities like actress Zhang Ziyi took up the Ice Bucket Challenge.

But for 41-year-old Chen Changming, a patient diagnosed with ALS, the disease is a daily reality. Before his diagnosis, Chen was an award-winning engineer behind a number of bridges in neighboring Zhejiang province. But he has now been bed-ridden for over 3 years.

His wife has witnessed first-hand how ALS drained the energy out of her husband.

"It started with a drag in his walk in 2010. Then it got worse. He felt less and less strength in his legs. Half a year later, he couldn't walk without holding on to someone else," she said.

Doctors say the disease causes patients' muscles to shrink and gradually lose their motor skills, as if their bodies are frozen.

"100 years after discovering ALS, the medical community remains unclear about how the disease works. Simply put, when the nerves fail to control the muscles, the muscles begin shrinking gradually. In the end, almost all patients die of respiratory failure," said Jiangsu People's Hospital neurologist Niu Qi.

After 5 years of frequent hospital visits and 400,000 yuan in medical bills, Chen is still fighting the disease. Some face even heavier financial burdens. The only medicine in the world that has shown signs of effectively treating ALS costs over 4,000 yuan a month and is not covered by medical insurance, forcing many patients to simply give up hope of their condition improving.

But for Chen, the worst part of the disease doesn't have anything to do with money. Despite losing his bodily functions, his mind remains crystal clear, and he can see the toll his illness has taken on his family.

His wife hardly leaves the house because Chen needs constant care. She doesn't get much sleep either, helping Chen turn over in bed an average of 15 times a night. Their ten-year old daughter has now become a skilled home nurse, who helps suction away her dad's phlegm.

Speaking to us through a computer that transforms his eye movements into words, Chen says "I want more people to know how difficult our conditions are, and the level of pressure our famalies live under."

As for Chen's wife, she has come to terms with the daily struggle.

"All I want now is to stay healthy myself so I can continue taking care of my husband," she said.

It's words like these that have kept this family together, as they continue to live with ALS.