包珍妮：用音樂演繹生命樂章

戚祥浩

活著的每時每刻，她都要竭盡全力。

她的正常肺功能早已喪失，呼吸依賴一臺24小時不間斷運作的呼吸機。

醫生預言她活不過四歲，而她今年已經16歲了。

她叫包珍妮，是浙江省溫州市文成縣一名 SMA 患者，因為運動神經元受損退化，全身肌肉萎縮無力，最瘦的時候，她只有36斤，如今，她僅有一根手指可以動。憑借唯一能動的右手大拇指，她點擊手機屏幕拼命學習日語、法語、英語，同時創作歌詞。她的作品被毛不易、廖俊濤、鐘易軒等明星爭先傳唱。

“路邊野花對我笑，在田園里奔跑，無拘無束多逍遙，累了就躺好，閉眼睡一覺，家里飯菜燒好，重拾童年的美好……”近日火爆的選秀節目《明日之子》的總冠軍毛不易演唱的這首歌曲《故鄉游》，詞作者正是包珍妮。

僅一根手指能動依然夢想不止

珍妮珍藏著一張照片，發黃的畫面中，她坐在公園里的躺椅上。她還有一張站立的照片，可惜弄丟了，一同消失的，還有站立的感覺。

實際上，她在一周歲左右，是能走的。大人把她放地上，她邁了一步，又一步，站在遠處回頭，咧著嘴巴笑。

家人喜出望外。然而，命運卻來了180度大轉彎。珍妮突然連站都站不住了。父母慌忙帶她去醫院檢查。包珍妮的父親包宗鋒是文成黃坦山區人，母親是洞頭人，身體都很健康。醫生卻診斷珍妮患有脊肌萎縮（SMA）。SMA，又稱脊肌萎縮癥，是由脊髓前角運動神經元變性導致肌無力、肌萎縮的疾病。患者由于運動功能受累不能行走、坐立，甚至不能舉頭。這種尚無對癥藥物的疾病會導致各種運動功能逐漸喪失。

這以后，她的狀況越來越差，從站立不穩到坐輪椅，后來連輪椅也坐不住了，一天二十四小時都躺在病床上。然后，是一次比一次猛烈的肺部感染，每一次都相當于去鬼門關走一趟。

珍妮斷斷續續上過一段時間小學，書籍成為行動不便的包珍妮最好的朋友。她每周至少要看完兩本書，作文寫得越來越漂亮，每個學期總能捧回學校頒發的很多獎狀。很多次，在父親背著她回家時，她高高地舉起手中的獎狀，舉過父親的頭頂。

那是屬于包珍妮為數不多的幸福時光，也是最奢侈的時光。

3年前，珍妮第四次被送進 ICU，那時候的病情最為危急，她躺在病房里，骨瘦如柴，只有36斤，連睜開眼睛的力氣都沒有。她的氣管被切開，戴著呼吸機，還插著進食管，在醫院待了兩個月。死神沒有帶走她，但幾乎奪走她所剩無幾的全部活動能力，全身只剩右手大拇指能動。

沉重的經濟壓力讓父母不得不選擇帶她回家護理，他們借宿在親戚家中，在好心人的幫助下，配備了吸痰機、制氧機、呼吸機。

“說不定治療藥物就出來了，總會好起來的。”這是她每天對自己說的最多的話。就像書中很多經歷磨難的主人公，最終都過上了幸福生活。盡管，希望那么遠。

創作打開了她生命另一扇窗

然而，活著才有可能創造奇跡。為了活下去，包珍妮強迫自己咀嚼食物，常人五分鐘能吃完的食物，她一般都需要一個小時，狀態不好的時候，甚至要兩個小時。

不僅要活下去，還要活出意義！

數次 ICU 九死一生的經歷告訴她及家人，每一次與外界接觸，都潛在足以令她致命的感染風險。小學畢業后，她只能躲在房間，縮在床上，瞪大眼睛看花白的墻壁，在滴答響個不停的鬧鐘聲中，她開始想到自己熱愛的文字。

她在病友鼓勵下，寫了《生命的色彩》，拿到了人生的第一筆稿費800元。她覺得整個天空都頓時亮堂起來。

她開始了更多寫作嘗試，哪怕于她是一種極大的體力考驗。

家人幫她把手機固定在床頭，她一個個字戳出來。手機位置歪了，她喊來家人重新扶正。又歪了，再扶正。再歪，家長索性直接幫她捧住手機。在手機上敲下短短幾百字，對于她的工作強度，好比普通人一口氣跑上幾百米。她卻迷上了這種“跑步”。

字里行間，她思緒飛揚。她想象著自己在雨中漫步，在山巔吶喊的樣子。好多回，她嘴角輕揚，不自覺地笑了。

文字打開了她生命里的另一扇窗。

在病友的幫助下，賀懋中老師為她的《夢想》譜曲。包珍妮還記得當時情景，剛被醫院切喉在病床上奄奄一息。這時，耳畔傳來《夢想》優美的旋律。這么美好的音樂竟有她的一部分貢獻。那一刻，她眼淚奪眶而出。

“活著，真好。”她想。

于是，有了《予生》：我慶幸著 又度過一個昨天/我追逐著明天追逐每個明天/我愛這世界 千變萬化的世界/我有許多心愿 來不及實現/我想偷走時間每一刻時間/恨不得每分每秒 再慢一點點。予生，給予新生，“我希望能夠給自己一個新的生命。”

由罕見病病友組建的8772樂隊，在沙寶亮老師的指導下，為珍妮的《予生》譜了優美的旋律。目前，《予生》的互聯網下載量達到了7000多次，每次下載能給珍妮帶來2元收入。

憑借一指之力給了更多人前行力量

《予生》也撐起了包珍妮父親包宗鋒面臨倒塌的生命之廈。在過去很長的一段時間內，包宗鋒的微信簽名一直是：“老天，為什么要這樣待我！”

這個從文成山區走出來的漢子，開過出租車、理發店，踩過三輪車，一心想闖蕩出一番事業，后來卻連三輪車也踩不了。

包珍妮的病況讓他幾乎絕望。直到珍妮偷偷留給他一封信：“我們應該珍惜眼前所擁有的，而不該苦苦追尋那些本就不屬于我們的。像我這樣的地步都能有勇氣面對生活，你是我的爸爸，有其女必有其父，你要比我更勇敢才對。”

“女兒只是個10多歲的孩子呀。”包宗鋒淚流滿面。小珍妮一直在努力做大人的榜樣：她安慰著父母，勸病友放棄輕生的念頭，并用僅能活動的一根手指和朋友一起開起了網店，希望能貼補家用。

她還努力學習英語、日語、法語，沒有力氣翻動教材，她就讓弟弟拿手機拍下來，一頁頁傳到手機上閱讀，希望有朝一日能替人翻譯。

《予生》打開局面后，她已經創作了40多首高質量歌詞。在實名注冊的微博上，她極少提及自己的病情，從不怨天尤人，字詞間充滿樂觀，她同時與10多位 SMA 病友保持聯絡，不斷用自己的樂觀情緒感染患同樣病癥的病友。

在 SMA 病友間，她是一個活躍分子。為了讓更多人知道 SMA，呼吁國內相關藥品盡快進入臨床使用，她和龔琳娜、胡彥斌、鄧飛等明星一起玩起了“含水唱歌”，用歌聲點燃生命之火！新浪微博的活動點擊量超過了一億人次。

“包珍妮在這種困境下都能努力學習，咱們又有什么理由懈怠呢？加油啊包珍妮，你一定能創造奇跡的！”一名網友在包珍妮的微博上這樣留言。

（本文照片由作者提供）

For 16-year-old Bao Zhenni， every second of her waking hours is a life-and-death struggle， and waking up still breathing is a bonus. The girl received the death penalty from the hospital when she had just learned how to walk. Bao is a victim of spinal muscular atrophy （SMA）， a rare neuromuscular disorder characterized by loss of motor neurons and progressive muscle wasting. The doctors predicted that she would not live past the age of four， but she proved the doctors wrong and is now 16 years old， though she has been living on a breathing machine since three years ago. She uses her right thumb – the only functioning part of her body， to fight against her destiny. She taught herself essentials of Japanese， French and English， and wrote songs for famous singers.

Bao Zhenni can barely recall how it felt to be able to stand up and walk when she was a baby. The disorder caused by a genetic defect struck when the girl turned one. Spinal muscular atrophy manifests in various degrees of severity， which all have in common progressive muscle wasting and mobility impairment. At first she was able to sit in a wheelchair. Then she became bedridden day and night， and has been sentenced to death again and again by lung infections.

She still managed to go to primary school for a few years. That is the only school education she has had. What she has learned since she dropped out of school are all from the books she reads. While in school， she managed to read at least two books a week and wrote beautiful compositions that won her a stack of certificates of merit from the school. When she was put into the ICU room for the fourth time about three years ago， she was too weak to open her eyes. She was reduced to only 18 kilograms. She came out of the room still alive， but on intensive respiratory support for the rest of her life.

“There will be new medicine for me to use someday， and I will be ok，” she encourages herself every day， looking forward to a happy ending at the end of all the sufferings.

How can I live just like this for the rest of my life？ How can a life be wasted like this？ There must be something better to do than staring at the white walls， she thought. Encouraged by her SMA friends， she lit up her writing dreams. The nightmare ended when she received 800 yuan for her first published essay titled . With the cell phone fastened to the head of her bed， she ‘wrote the characters into the phone with her thumb. For her， the process was a physical exertion and a spiritual baptism that turns the girl into a warrior.

She began to write songs. She wrote and the lyrics were set to music by a composer named He Maozhong. The moment the melody of streamed into the ICU room in which her life was vanishing was the most beautiful moment in her life. The melody brought tears into her eyes and a weak smile on her face， bringing her back to all the beauty of being alive.

I hope I can be reborn， she wrote in . The song has been downloaded more than 7，000 times， bringing hope and financial support to the battered family. “It is not that we are saving her life. She saved my life，” the girls father Bao Zongfeng recalled how his 10-year-old daughter encouraged him in the darkest days. “We must cherish what we have now， instead of pursuing what we dont have. Like father， like son. You are the dad of a brave girl， and you should be my hero，” Zhenni wrote in a letter that healed the broken heart of the man.

Over the years， Bao Zhenni has written more than 40 songs and has been working closely with other SMA patients to call on the clinical application of new SMA medicine. A singing campaign she took part in with a group of famous singers including Gong Linna， Hu Yanbin and Deng Fei drew more than 100 million hits from netizens and a new army of fans. In her weibo postings， Bao Zhenni never feels the need to mention her sufferings. She tells the world that she was born to give and to feel happy.