\n經副院長林志隆協助後,透過手術維持雙手功能,同時也減少痙攣性疼痛,但是磨難似乎沒有結束,癌細胞仍擴散到其他部位,加上疫情影響,阻斷他出國競賽之路,不服輸的他,只好選擇組裝鋼彈模型換取微薄收入自立更生,藉此保持雙手靈敏度,為日後出國做好最佳準備。
\n閻家欣透露,新型「脊髓電刺激療法」,能減少5至7成的疼痛,並減少藥物的服用量,也能延長睡眠時間,提升生活品質,無奈該裝置金額龐大,讓他一度卻步,只好向林副院長表達內心糾結。
\n由於林志隆副院長也擔任「愛相髓脊髓神經病變關懷協會」理事長,得知患者處境,特別與國立臺灣交響樂團合辦「圓夢計畫」感恩音樂會,藉由義賣募得100萬元收入,轉為弱勢民眾醫療費用,讓閻家欣就醫治療露出曙光,上個月他順利完成手術,出國夢想露出曙光。
\n林志隆副院長說,許多罕病患者雖受陷於經濟條件弱勢,不得不暫時中斷夢想,但他們依舊不認輸,在不同領域發揮長才,希望藉由協會拋磚引玉,能夠匯集社會大眾的愛心資源,讓飽受疼痛的患者們也能感受到社會溫暖,繼續為自己的夢想而努力。
「家族性澱粉樣多發性神經病變(FAP)」是顯性遺傳疾病,據統計,臺灣多以男性居多,多發生於50歲以上,疾病惡化速度快,若沒有適當控制,可能在4到5年之內就退化至手腳無力、坐輪椅、無法自行吃飯等狀態,需仰賴他人打理生活起居。病友在「公共政策網路參與平台」發起的「拯救臺灣特有罕病FAP,呼籲加速FAP罕藥健保給付」提案,已達到5492人附議,正式通過成案門檻,呼籲讓給付案能早日達到共識,順利通過。在健保未能給付前,希望盼國民健康署能依現行《罕見疾病防治及藥物法》第33條予以補助,讓病情有急迫需求的病友盡快有治療機會。
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