Ice bucket challenge turns to cash freeze two years on from ALS fundraising craze

This time last year, 43-year-old Mike Ko could speak clearly, use his hands to write, and go out using a wheelchair to eat with his friends at a restaurant. Now he can only make sounds, and even a simple act such as lifting his head to sip water exhausts him. Leaving his apartment is a struggle.

It has been three years since Ko was diagnosed with amyotrophic lateral sclerosis, a rare type of ­motor neurone disease that causes a victim’s muscles to rapidly weaken to the extent that they have difficulty moving, speaking, swallowing and eventually even breathing. Most victims die of ­respiratory failure or pneumonia in the first five years.

A former fashion designer, Ko spends his time mostly ­immobile, laying down or sitting in the flat he shares with his 70-year-old mother and a domestic helper. Days are occupied with searches and ­attempts to apply for overseas trial treatments that may help ease his suffering – efforts that have so far been unsuccessful.

“There’s still no cure, no trial, and nothing can help me,” Ko said, speaking through his helper. “Every day is like the same day. It seems like I’m going to die tomorrow. I’m getting worse every ­minute – I really need a miracle. I want to tell everyone how horrible ALS is.”

It’s the incurable disease that inspired the 2014 viral ice bucket charity campaign in which people across the globe filmed themselves pouring a bucket of ice over their heads – simulating the pain felt by ALS patients – and donating to charities, posting their efforts on social media and challenging others to do the same.