#米紙｜父子同患罕見病 7歲仔仔基因突變嚴重智障 爸爸患肌肉萎縮症 為母則強撐起半邊天 打理頭家井井有條 #筆記紙
米紙
•
May 14, 2023
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**更正：0012 Janice和Keith相識11年，結婚9年。 Keith在中二時發現患有罕見病肌肉萎縮症，是基因染色體4Q35變異而引致，嚴重者會出現吞嚥困難和呼吸功能衰退。Keith在2012年遇上Janice，至今已經相守相牽超過11年。兩位同樣很喜歡小朋友，婚後亦有共識希望有小朋友，Janice在做足產檢 ，確認了爸爸的病沒有遺傳之下，BB天暘順利出生。 可惜在天暘一歲多時因為基因突變，確診了另一種比爸爸的病更罕見的罕見病，就是全港只有兩宗病例的基因病——1Q44缺失症。 因為Keith情況變差，加上媽媽要全天侯照顧天暘，所以兩人現時已經沒有工作。Keith閒時會在主力服務輪椅人士的自強協會做義工，同時協助經營《大瞳小椅》YouTube頻道。社區上對輪椅人士的無障礙配套雖然不時被詬病，慶幸協會發掘到一些社區夥伴，願意去提供協助，如COMEDI Health的視像診症服務。 對於Keith和天暘，Janice就有如神奇媽媽般存在，照顧一家兩位罕見病患者，每日仿如有三頭六臂，支撐着家庭中的大部分事務。今集《筆記紙》我們記錄了一個關於這位「神奇媽媽」如何照顧兩位罕見病患者的故事。 採訪：Ruby IG：haha.heyhey 插畫：Fiona IG：Fionaholovefood 攝影：Hei IG：67haha_photo 剪接：Sam 鳴謝：Hanaichi.flower IG：@hanaichi.flower.hk 監制：Ash、Kay ＿＿＿ 《米紙》只是還想說故事 YouTube : https://bit.ly/3rjGikU Facebook : https://bit.ly/3kuGH2T Instagram : https://bit.ly/36Gb6TC #母親節 #神奇媽媽 #奇異女俠 #罕見病 #病人 #母愛 #正能量 #偉大 #感動 #堅強 #筆記紙 #米紙 #米紙Ruby #大瞳小椅 #輪椅
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