巫家姊弟生命故事 罕病 尼曼匹克症的挑戰｜記者 劉十賢 張書堯 林洧旭｜華視新聞雜誌｜EP2481單元3 2025.11.1
華視新聞雜誌
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November 5, 2025
華視新聞雜誌
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🔥完整版影片連結： https://youtu.be/WjBh1oh743g 🔥單元1 外籍移工 詐騙肥羊? https://youtu.be/wR3yIT8Z0Cc 🔥單元2 全民運動超慢跑 https://youtu.be/6K9SJZX9qWQ ► ►內容重點： 命運的挫折，往往能顯現出生命的韌性。一種名為「尼曼匹克症」的罕見遺傳疾病，患者體內脂質代謝異常，影響神經系統，導致運動與語言功能喪失，巫以欣與巫以諾這對姊弟，自幼罹患這種疾病，但他們不畏艱難，奮力完成學業，並參與許多公益活動。巫家父母在過去這段，孩子身體日漸退化的過程中，努力尋找調適與喘息的方式，更持續透過公開演講與病友聯誼，分享經驗、媒合資源，成為許多罕病家庭的燈塔.... ► ►分段重點 00:00 巫家姊弟生命故事 罕病 尼曼匹克症的挑戰 09:45 尼曼匹克症 巫家姊弟永不放棄 人生罕見旅程 #罕病 #尼曼匹克症 #罕見遺傳疾病 #代謝異常 #神經系統 #身障 #語言喪失 #巫以欣 #巫以諾 #公益 #巫家 #華視新聞雜誌 #華視 📺請鎖定@華視新聞雜誌 ▌52新聞資訊台：週六晚間20:00 ▌華視主頻12台：隔週五下午15:55 ⭐加入@FB粉絲團 掌握最新消息 https://www.facebook.com/newsmag.cts/ █ 訂閱華視新聞 CH52 █ 【YouTube】 https://pse.is/CTS_YT 【Facebook】 http://pse.is/CTS_FB 【華視新聞網】 http://pse.is/CTS_NEWS 【全球資訊網】 http://pse.is/CTS_official
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