32-year-old Shi Hui has suffered from cerebellar atrophy since she was diagnosed 14 years ago and her body has gradually lost the ability to move and speak, she is still conscious but unable to prevent changes in her body. At that moment, the cheerful and lively girl was trapped in her body and suffering from an illness. In an exclusive interview with TVB’s “News Insight” recently, Shi Hui’s mother asked the company to start discussing the issue of euthanasia.
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Paralyzed by the disease, unable to take care of herself in bed
Shi Hui’s mother recently appeared on TVB news “News perspective“tells the story of her daughter’s illness. She confirmed she was about 17 when she suffered from cerebellar atrophy. She was in the prime of her life. The news of her illness made her family cry hysterically.
Shi Hui, who was ill, was the calmest at the time and knew how to comfort her mother:
“Don’t be sad, Mom, I’m fine!”
Shi Hui still had a cheerful personality early on in his illness, and when he was still counting down to the end of the year with his friends a year later, he expressed a New Year’s wish to “keep laughing and being happy”. The deterioration in her condition did not bring her happiness. His speech and her mobility gradually disappeared and she even had trouble chewing food. This transformed her from a cheerful girl into a bedridden patient. Mom takes care of her.
The daughter once wanted to suppress the conflicted mother
Faced with her daughter’s illness, Shi Hui’s mother admitted that the process of taking care of her was really difficult: “I’m also very afraid of not being able to go to the last step, because there are so many difficulties in life. . “Now I just hope he will have enough food, sleep well and be able to go to bed. bath. “My body, my mind and my strength can still handle it. I’ll think about what else I can give my daughter, like taking her off the street and buying more cakes she wants to eat.”
“Mom will do my best to help you, Mom loves you very much, Mom won’t give up on you!”
Suffering from the disease, Shi Hui once revealed his readiness for euthanasia and wanted to make a choice for his own life, but his mother was very conflicted about this:
“When you hugged and touched her, how could you be willing to suppress her? In fact, who would want their daughter to leave? But when it was painful to see her, and I couldn’t help her … As if I never could. to get her out of a dark room, she would have been trapped in it. “
On the way to take care of her daughter for the past decade, Shi Hui’s mother said she will always face a loss.When she wants to give up, she doesn’t know how far her life has fallen and this story will end. She sometimes she even goes away with her daughter in her arms. In response to the outside world’s question that “if there is euthanasia in Hong Kong, life is not precious,” Shi Hui’s mother bluntly said:
“My life belongs to me, why can’t I control my own life? Why should I torture myself in such a painful process? Society should start discussing the issue of euthanasia, because there is a right to choose, because the outside world he often ignores it. The suffering of those patients! “
At present, Hong Kong laws provisionally consider euthanasia to involve acts such as intentional homicide and manslaughter by a third party and can be classified as a criminal offense, however the issue of euthanasia has not been formally discussed. in the society.
Cerebellar atrophy cannot be cured
According to the Hong Kong Cerebellar Atrophy Association, the medical name for cerebellar atrophy is spinocerebellar ataxia, which is caused by degenerative atrophy due to genetic mutations in the cerebellum, brain stem, and spinal cord of patients. Therefore, the disease is a self-dominant genetic disease, so if a parent has cerebellar atrophy, there is a 50% chance that the child will also suffer from the disease.
In the initial stage of the disease, the patient may walk unsteadily, lose balance when standing, etc .; In the intermediate stage, there may be a lump in the tongue, cramps during sleep, etc .; However, this disease is a degenerative disease and there is currently no cure for it.As far as treatment is concerned, the focus is on rehabilitation therapy, so that patients can delay the degree of degeneration and maintain maximum capacity for self-care. .
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Written by: Wu Zifeng
