Motor neurone disease ALS: Hong Kong patients inspire fundraising that helps city researchers looking for a cure

A Hong Kong father of two hooked up to a ventilator describes how he lives with ALS, the incurable motor neurone disease (MND) that killed Stephen Hawking

Hong Kong friends of Scottish rugby player Doddie Weir, who died of MND, and the daughter of a doctor who died of ALS, are raising funds to help find a cure

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Hong Kong father of two Sze Chi-wai (above) shines a light on living with ALS, a form of motor neurone disease. These degenerative diseases are incurable, but many people are raising funds for research into them. Photo: Xiaomei Chen

Published: 5:15pm, 2 May 2024

When Sze Chi-wai received a life-changing medical diagnosis seven years ago, aged 49, he was working as a driver and loved water sports and going out with his family.

Today the Hongkonger cannot move and is hooked up to a ventilator 24 hours a day.

Sze has amyotrophic lateral sclerosis (ALS), a rare neurodegenerative disease that affects nerve cells in the brain and spinal cord.

Falling under the umbrella of motor neurone disease (MND), ALS significantly affects mobility, breathing, communication, and mental well-being, the symptoms progressively worsening over time.

Sze Chi-wai at home in Tuen Mun, Hong Kong. Sze has motor neurone disease (MND), a rare condition that affects the brain and nerve cells. Photo: Xiaomei Chen

There is no cure.

“For this disease, if I am always unhappy, it will aggravate my condition. And if my condition is aggravated, the burden on my family will be even greater and more difficult, so I will face it positively. There is no other way,” says the father of two.