戚祥浩

活着的每时每刻，她都要竭尽全力。

她的正常肺功能早已丧失，呼吸依赖一台24小时不间断运作的呼吸机。

医生预言她活不过四岁，而她今年已经16岁了。

她叫包珍妮，是浙江省温州市文成县一名 SMA 患者，因为运动神经元受损退化，全身肌肉萎缩无力，最瘦的时候，她只有36斤，如今，她仅有一根手指可以动。凭借唯一能动的右手大拇指，她点击手机屏幕拼命學习日语、法语、英语，同时创作歌词。她的作品被毛不易、廖俊涛、钟易轩等明星争先传唱。

“路边野花对我笑，在田园里奔跑，无拘无束多逍遥，累了就躺好，闭眼睡一觉，家里饭菜烧好，重拾童年的美好……”近日火爆的选秀节目《明日之子》的总冠军毛不易演唱的这首歌曲《故乡游》，词作者正是包珍妮。

仅一根手指能动依然梦想不止

珍妮珍藏着一张照片，发黄的画面中，她坐在公园里的躺椅上。她还有一张站立的照片，可惜弄丢了，一同消失的，还有站立的感觉。

实际上，她在一周岁左右，是能走的。大人把她放地上，她迈了一步，又一步，站在远处回头，咧着嘴巴笑。

家人喜出望外。然而，命运却来了180度大转弯。珍妮突然连站都站不住了。父母慌忙带她去医院检查。包珍妮的父亲包宗锋是文成黄坦山区人，母亲是洞头人，身体都很健康。医生却诊断珍妮患有脊肌萎缩（SMA）。SMA，又称脊肌萎缩症，是由脊髓前角运动神经元变性导致肌无力、肌萎缩的疾病。患者由于运动功能受累不能行走、坐立，甚至不能举头。这种尚无对症药物的疾病会导致各种运动功能逐渐丧失。

这以后，她的状况越来越差，从站立不稳到坐轮椅，后来连轮椅也坐不住了，一天二十四小时都躺在病床上。然后，是一次比一次猛烈的肺部感染，每一次都相当于去鬼门关走一趟。

珍妮断断续续上过一段时间小学，书籍成为行动不便的包珍妮最好的朋友。她每周至少要看完两本书，作文写得越来越漂亮，每个学期总能捧回学校颁发的很多奖状。很多次，在父亲背着她回家时，她高高地举起手中的奖状，举过父亲的头顶。

那是属于包珍妮为数不多的幸福时光，也是最奢侈的时光。

3年前，珍妮第四次被送进 ICU，那时候的病情最为危急，她躺在病房里，骨瘦如柴，只有36斤，连睁开眼睛的力气都没有。她的气管被切开，戴着呼吸机，还插着进食管，在医院待了两个月。死神没有带走她，但几乎夺走她所剩无几的全部活动能力，全身只剩右手大拇指能动。

沉重的经济压力让父母不得不选择带她回家护理，他们借宿在亲戚家中，在好心人的帮助下，配备了吸痰机、制氧机、呼吸机。

“说不定治疗药物就出来了，总会好起来的。”这是她每天对自己说的最多的话。就像书中很多经历磨难的主人公，最终都过上了幸福生活。尽管，希望那么远。

创作打开了她生命另一扇窗

然而，活着才有可能创造奇迹。为了活下去，包珍妮强迫自己咀嚼食物，常人五分钟能吃完的食物，她一般都需要一个小时，状态不好的时候，甚至要两个小时。

不仅要活下去，还要活出意义！

数次 ICU 九死一生的经历告诉她及家人，每一次与外界接触，都潜在足以令她致命的感染风险。小学毕业后，她只能躲在房间，缩在床上，瞪大眼睛看花白的墙壁，在滴答响个不停的闹钟声中，她开始想到自己热爱的文字。

她在病友鼓励下，写了《生命的色彩》，拿到了人生的第一笔稿费800元。她觉得整个天空都顿时亮堂起来。

她开始了更多写作尝试，哪怕于她是一种极大的体力考验。

家人帮她把手机固定在床头，她一个个字戳出来。手机位置歪了，她喊来家人重新扶正。又歪了，再扶正。再歪，家长索性直接帮她捧住手机。在手机上敲下短短几百字，对于她的工作强度，好比普通人一口气跑上几百米。她却迷上了这种“跑步”。

字里行间，她思绪飞扬。她想象着自己在雨中漫步，在山巅呐喊的样子。好多回，她嘴角轻扬，不自觉地笑了。

文字打开了她生命里的另一扇窗。

在病友的帮助下，贺懋中老师为她的《梦想》谱曲。包珍妮还记得当时情景，刚被医院切喉在病床上奄奄一息。这时，耳畔传来《梦想》优美的旋律。这么美好的音乐竟有她的一部分贡献。那一刻，她眼泪夺眶而出。

“活着，真好。”她想。

于是，有了《予生》：我庆幸着 又度过一个昨天/我追逐着明天追逐每个明天/我爱这世界 千变万化的世界/我有许多心愿 来不及实现/我想偷走时间每一刻时间/恨不得每分每秒 再慢一点点。予生，给予新生，“我希望能够给自己一个新的生命。”

由罕见病病友组建的8772乐队，在沙宝亮老师的指导下，为珍妮的《予生》谱了优美的旋律。目前，《予生》的互联网下载量达到了7000多次，每次下载能给珍妮带来2元收入。

凭借一指之力给了更多人前行力量

《予生》也撑起了包珍妮父亲包宗锋面临倒塌的生命之厦。在过去很长的一段时间内，包宗锋的微信签名一直是：“老天，为什么要这样待我！”

这个从文成山区走出来的汉子，开过出租车、理发店，踩过三轮车，一心想闯荡出一番事业，后来却连三轮车也踩不了。

包珍妮的病况让他几乎绝望。直到珍妮偷偷留给他一封信：“我们应该珍惜眼前所拥有的，而不该苦苦追寻那些本就不属于我们的。像我这样的地步都能有勇气面对生活，你是我的爸爸，有其女必有其父，你要比我更勇敢才对。”

“女儿只是个10多岁的孩子呀。”包宗锋泪流满面。小珍妮一直在努力做大人的榜样：她安慰着父母，劝病友放弃轻生的念头，并用仅能活动的一根手指和朋友一起开起了网店，希望能贴补家用。

她还努力学习英语、日语、法语，没有力气翻动教材，她就让弟弟拿手机拍下来，一页页传到手机上阅读，希望有朝一日能替人翻译。

《予生》打开局面后，她已经创作了40多首高质量歌词。在实名注册的微博上，她极少提及自己的病情，从不怨天尤人，字词间充满乐观，她同时与10多位 SMA 病友保持联络，不断用自己的乐观情绪感染患同样病症的病友。

在 SMA 病友間，她是一个活跃分子。为了让更多人知道 SMA，呼吁国内相关药品尽快进入临床使用，她和龚琳娜、胡彦斌、邓飞等明星一起玩起了“含水唱歌”，用歌声点燃生命之火！新浪微博的活动点击量超过了一亿人次。

“包珍妮在这种困境下都能努力学习，咱们又有什么理由懈怠呢？加油啊包珍妮，你一定能创造奇迹的！”一名网友在包珍妮的微博上这样留言。

（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.