"Only by persevering in faith and living can we protect my world." A 25-year-old girl in Hong Kong suffered from the rare neurofibromatosis type 2 disease. The tumor has been growing over the years. She has undergone 8 operations since she was four years old, and even the doctor It is said that "there is no point in having another operation." She is a girl who is able to move freely. She is gradually affected by diseases and has become deaf, half-paralyzed, and has blurred vision. She is conscious and uses her right hand to communicate with the outside world in Braille, just like the Hong Kong version. The Diving Bell and the Butterfly.
The tumor continued to press her jaw and she had difficulty swallowing. She walked through the gate of hell three times, but she did not give up on herself. Instead, she published a book to encourage Hong Kong people to move forward in the epidemic or difficult situation through her own experience, "My situation can't be turned back...don't wait You can only cherish when you lose.”
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After eight major surgeries, he died and was resurrected
The 25-year-old Yuning has been staying at home to recuperate under the 24/7 care of her parents and foreign domestic helpers. She needs to sit in a wheelchair and relies on liquid food to be injected into her stomach and throat to maintain nutrient absorption. The physical disability brings countless shackles to Yunning. With Shackles, her mother revealed that Yunning loves food very much, "I used to write pictures, texts and picture books to share, the same cup of coffee in the same dining room, I tried again a few months ago and a few months ago, she could tell the difference in taste, but she swallowed it. If you don’t arrive, I will watch the food show in the nearest row; I like watching books, dramas and movies. If my family is not strong enough to read books, I will ask me for help.”
Although her body is restricted, her mind can still freely penetrate the shell like a butterfly. She can use her right finger to draw English letters or Chinese strokes to spell words on her mobile phone, or use sign language to express her feelings. She was assisted by social workers at the end of last year. Sponsored by the "Dream Come True Fund", he completed his personal book "my own life", writing the mental journey from the onset to the present.
The incidence rate is only 1 in 40,000, and there is no cure, and the tumor can only be continuously removed
Yuning said in the book that her right eye was suddenly swollen and had pigmentation spots on her body when she was in primary four. Her parents took her to the hospital for a detailed examination. The result was that she was diagnosed with neurofibromatosis type 2, a rare incidence of only 1 in 40,000. The disease, the tumor will continue to grow along the nerve line, affecting the brain, hearing, vision and other organ functions, basically there is no cure, only through surgery to continuously remove the tumor to relieve the disease.
She underwent 8 major surgeries before and after. She had her first meningioma surgery as early as the age of 8. After she was in high school, her condition continued. Her hearing loss became completely deaf. She could only pay attention to the textbooks and the teacher's power point notes in class, but it did not hinder her determination to pursue further studies.
Don't be afraid of physical disability and realize your dream of graduating from college
In the 2014 DSE exam, she obtained a score of 17 as a student with special educational needs, which was not enough to enter the Bachelor of Design program at the university of her choice, so she enrolled in the Higher Diploma in Fashion Design of the Hong Kong Design Institute instead, and tried her best to achieve a high degree. After graduation, he will be admitted to the Polytechnic University to enter the third year of the Department of Clothing and Textiles.
However, the disease did not let her go. The most frequent operation occurred in April 2018. At that time, she was a fourth-year student at PolyU. On the eve of submitting her graduation project, she underwent three major operations within one month, including the removal of a left ear acoustic nerve tumor. , Take out the left skull to reduce the pressure on the brain, and then open the brain to suck out the blood clot.
Social worker: I have never seen her say "I can't stand it"
The social worker of the Hong Kong Deaf Welfare Promotion Association, who has been assisting her, recalled that when she visited Yunning, she saw her receiving up to 4 sessions of rehabilitation treatment for a total of several hours a day. , the performance is hard and clean.
After she was discharged from the hospital, she successfully completed her studies and graduated with a second-level honors degree in 2019. She aspires to be a slasher and designs various accessories to sell online or in markets.
Maybe my situation can't be turned back, but I will cherish what I have now, and cherish the people who love me now. Everyone should be like this. Don't wait until you lose to know how to cherish.
No matter what the outcome, I still haven't given up.
Yunning
Good times don’t last long. In October 2020, her cervical vertebra was pressed down by a tumor again, and she had to undergo emergency resection. She stayed in the hospital for two months. It happened to be during the most severe period of the epidemic. The medical escort delivered the supplies. Afterwards, she suffered from stroke sequelae on the left side of her body. Currently, she expresses sign language or writing by swinging her right hand and head. Even her usual use of pictures and handwritten words to express what she sees and thinks in the journal has changed from the neat steel chain before the operation to The post-operative scribbles showed that her physical function was deteriorating, but she still wrote stroke by stroke in the book, showing a steely will, "Maybe my situation can't be turned back, but I will cherish what I have now and cherish the moment. People who love me, everyone should be like this, don't wait until you lose them to cherish them. No matter what the result is, I haven't given up."
I have seen many elderly people who have no one to take care of them during the epidemic and have lost their lives (dead). Unless we cannot take care of them, I think (staying at home) is the best decision.
Yunning's mother
Sixty-year-old father waits by bedside night and refuses to send his daughter to the institution
The future of neurofibromatosis patients seems to be like a passage covered with thorns. As nerve tumors grow in different organs of the body, the function gradually declines. If the blood vessels or the central nervous system are further pressed, it may be fatal.
Yun Ning's mother quoted the doctor as saying that the resection operation was of little significance. In recent years, her daughter's lower jaw has been pressed against the bottom of the bottom by a tumor, and she has difficulty swallowing. She has to intubate her throat for a long time to suck saliva. If I can't swallow saliva, my trachea will be blocked, and my oxygen level will drop sharply. I have tried 3 times of sudden convulsions and then I lost my breath. The most recent one was more than a month ago. I'm back." The father, who is over 60 years old, stays at the bedside to take care of his daughter from early morning to early morning. "In 5 to 10 minutes, I have to get up and make sure I'm all right. It's basically hard to sleep." A friend saw the two The old hard worker once suggested that Yun Ning should be sent to the nursing home for care, but her mother was grateful, "I see that there are many elderly people who are not cared for by the epidemic (dead). ) This is the best decision." The three of them put their hands together on the wheelchair platform, saying nothing.
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