16 October 2018
The winners of this year's Top Ten Warriors of Regeneration Awards organized by the Regeneration Society. Photo: HKEJ
The winners of this year's Top Ten Warriors of Regeneration Awards organized by the Regeneration Society. Photo: HKEJ

Woman with rare disease, nine others named regeneration warriors

A 36-year-old woman, who has been living with a rare muscular disease since she was a child, has been honored for her determination not to yield to adversities in life and her fearless and positive attitude toward death.

The woman was one of the winners of this year’s Top Ten Warriors of Regeneration Awards given out on Sunday, the Hong Kong Economic Journal reports.

The competition, initiated by the Regeneration Society, a non-profit and charitable rehabilitation organization, seeks to honor individuals stricken by serious diseases who have displayed courage and strong willpower in facing the challenges of life.

It is hoped that by recognizing the strength of their character, these individuals can inspire the public to develop a more positive attitude toward life.

Interviewed by media, the lady awardee revealed that she has had Spinal Muscular Atrophy (SMA) since she was a child.

Her affliction is a rare genetic neuromuscular disorder characterized by the loss of motor neurons and progressive muscle wasting, which often leads to early death. She has been wheelchair-bound since childhood.

While aware that her life may end at any time, she said she has never been afraid of death because she tries to make the most of every minute that she is alive.

“Although I live in the dark, I can still see some light that comes from people who suffer like I do – my teachers, classmates and social workers,” the woman said.

Despite her worsening conditions, she had been able to gain admission to the Department of Psychology of the Chinese University of Hong Kong after finishing secondary school. Recently she completed a master’s degree program in social work at the Hong Kong Polytechnic University.

She is now planning to obtain a doctorate by conducting researches on the sexual rights of the disabled and the issue of euthanasia.

She has also brought from overseas the concept of the Death Café, where people can discuss death over food and drinks. She has also formed a platform for seminars on the subject while promoting environment-friendly funerals.

Through efforts by her group, Chief Executive Carrie Lam Cheng Yuet-ngor has agreed to consider introducing a newly developed drug that can help SMA sufferers.

Among other regeneration warriors, a man suffering from blindness in both eyes had just become the first visually impaired athlete in the world to complete the Antarctica Marathon earlier this year.

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