12/06/2026
❤️视频重温❤️
现年28岁的黄宝仪，在21岁正值青春年华时不幸罹患罕见疾病——威尔森氏症（Wilson Disease）。这场突如其来的病变，让原本活泼开朗的她，从能够自由行走、说话的少女，逐渐变成行动受限、言语不清，甚至一度无法进食与动弹的病患。
威尔森氏症是一种铜代谢障碍的常染色体隐性遗传疾病，发病率约为两万人中才有一人。由于体内无法正常排出铜元素，过量的铜会逐渐积聚身体里。这些都囤积在宝仪的在眼睛、肝脏及大脑，影响神经系统运作，导致患者失去身体协调与控制能力，严重时甚至危及生命。
宝仪发病初期，先是出现牙龈出血和脸部抽搐症状。后来，她发现自己走路时身体会不断向后倾倒，连吃东西都无法保持平衡。病情迅速恶化后，她不仅无法正常行走和说话，身体更逐渐僵硬萎缩，连最基本的生活能力也失去了。医生曾一度断言她的生命只剩下8个月。
面对这样的噩耗，身为单亲妈妈的谢穗穗几近崩溃，却从未放弃女儿。她带着宝仪四处求医，无论中医、西医、保健品，甚至宗教信仰的力量，她都愿意尝试，只希望为女儿争取一线生机。
“不要放弃，既然来到这一步，就要学会接受和面对。”这是妈妈一直对宝仪说的话。
最艰难的时候，宝仪因疼痛导致全身僵硬，即使注射止痛药和麻醉药也无法缓解，只能在剧痛中慢慢睡去。然而，就在大家都以为希望渺茫之际，奇迹悄悄出现了。
某一天，宝仪的一根手指突然能够活动。妈妈惊喜万分，立刻递上一台手机给她。令人感动的是，宝仪竟然能够打字表达自己的想法，随后更开口说出了久违的一句话：
“我要吃饼干。”短短五个字，让妈妈重新看见了希望。
由于长期照顾宝仪，谢穗穗的腰骨也因此受伤。加上儿子需要升大学，她不得不重新投入工作维持家庭生计。在万般无奈之下，她将照顾了6年的宝仪送往渡众残障与老人之家，希望有人能够继续陪伴和照顾她。
在那里，宝仪遇见了生命中另一位重要的人——渡众残障与老人之家负责人古进财。
初见宝仪时，古进财心里满是不舍与心酸。他不断问自己：“我还能为她做些什么？”从那以后，他开始陪伴宝仪走过人生另一段旅程。
虽然两人没有任何血缘关系，但宝仪早已把古进财当成自己的干爹。古进财鼓励她通过玩积木训练手部协调能力，并准备5公斤哑铃让她每天练习，希望增强肌力，让她能够慢慢恢复自理能力。
在他的陪伴下，宝仪已经能够自行上下床，生活能力也逐渐提升。
古进财笑着对宝仪说：“可能是前世欠你的，今世要来还。”
他说，刚开始照顾宝仪确实不容易，连帮她洗澡都觉得有点不方便，但这些年来，他早已把宝仪当成自己的亲生女儿看待。只要是自己能力所及的事情，他都会尽力去做。
“我始终抱着希望，希望有一天她能够重新回到属于自己的舞台，发展自己的事业，然后把自己得到的爱，再传递给更多人。”
2020年开始，宝仪接触了视频剪辑。虽然行动不便，但她凭着毅力自学相关技术，并将作品分享到社交媒体平台。她希望通过自己的经历，让更多人认识威尔森氏症，也让社会看见罕见疾病患者所面对的挑战与坚持。
如今的宝仪，依然每天与病魔抗争，却从未放弃希望。
如果有一天我能够好起来，可以重新走路，宝仪想要做什么？她通过手机打字写下自己最大的愿望：我最想做的事情，就是带妈妈去旅行。
她的另一个心愿就是拥有一台电动轮椅，可以提升行动便利。2025年某天，当我们把电动轮椅送到该中心时，让宝仪坐上去那一刻，她真的感到兴奋不已，三年的等待让她如愿以偿。从视频中，Yvonne和古进财可以深深感受到她的喜悦。
28-year-old Poh Yee was diagnosed with a rare genetic disorder called Wilson Disease when she was just 21 years old. Wilson Disease affects copper metabolism, with only about one in every 20,000 people diagnosed with the condition. Because her body is unable to remove excess copper, it gradually accumulated in her eyes, liver, and brain, causing damage to her nervous system and affecting her ability to control her movements.
In the early stages of the illness, Poh Yee experienced bleeding gums, facial muscle twitching, and balance problems. Her condition deteriorated rapidly, leaving her unable to walk, speak, or eat normally. Her body gradually became stiff and weakened, and doctors even predicted that she had only eight months to live.
Despite the devastating diagnosis, her single mother, Sui Sui, never gave up on her daughter. She sought every possible treatment, including Western medicine, traditional Chinese medicine, health supplements, and spiritual support, hoping to find a way to save her daughter. During the most painful periods, Poh Yee suffered severe body stiffness and pain that could not be relieved even with painkillers or anesthesia.
Just when hope seemed lost, a miracle happened. One day, Poh Yee managed to move one of her fingers. Her mother quickly handed her a mobile phone, and to everyone's surprise, she was able to type and express her thoughts. Soon after, she spoke her first words in a long time: “I want to eat biscuits.” Those simple words gave her mother renewed hope.
After years of caregiving, Sui Sui suffered a back injury. With her son preparing for university and the need to support the family financially, she made the difficult decision to place Poh Yee at Du Zhong Disabled and Elderly Care Home after caring for her for six years.
There, Poh Yee met an important person in her life, Mr. Koo i, the person in charge of the home. Although they are not related by blood, he treats her like his own daughter. He encourages her rehabilitation through activities such as building blocks and strength training, helping her regain confidence and improve her daily living skills. Today, Poh Yee is able to get in and out of bed on her own.
In 2020, Poh Yee began learning video editing by herself and started sharing her work on social media. Through her story, she hopes to raise public awareness about Wilson Disease and the challenges faced by people living with rare diseases.
Although she continues to battle her illness every day, Poh Yee has never lost hope. Her greatest wish is to walk again one day and take her mother on a holiday. Another dream she had waited three years for was an electric wheelchair. In 2025, when she finally received it, her face lit up with joy. It was a deeply touching moment for everyone who witnessed her long-awaited dream come true.
Through the video, Yvonne and Mr Koo could deeply feel the happiness and excitement she experienced when her long-awaited wish finally came true.
