17岁，对于一个正常男孩来说，正是徜徉在校园里，尽情享受学习和运动乐趣的大好时光。而他，李肖亚，同样是17岁，却因患了一种罕见的病，在轮椅上度过了10年。当被别人称为“渐冻人”的时候，家人就知道他很有可能活不过20岁。看着生命力一天天从孩子身上流失，家人痛心之余却作出了一项“坚强”的决定——如果哪天孩子不在了，一定要将其眼角膜捐献出去。

17 years old,For a normal boy speaking,It is walking in the campus,Enjoy learning and sports fun big time.and he,LiXiaoYa,The same is 17 years old,However because of suffering from a rare disease,In a wheelchair spent ten years.When being called"Gradually freezing"when,The family will know that he is likely to live but twenty years of age.Look at life from the loss of children day by day,The family grieved over but made a"strong"Decision - if which day the children were not in the,Must the corneal away.

　　

A a

　　

7岁开始倒数生命 7 years old start the countdown life

　　

前几天他第一次喊“救命” a few days ago the first time he shouted"help"

　　大年初九下午，一场大雪没能阻止李肖亚一家从盐城建湖老家赶回扬州。李肖亚的奶奶刚过完70大寿，一家人还沉浸在喜庆的气氛中，就在刚进扬城时，一声“妈妈救命”让李春干的心一紧。只见肖亚的脸色惨白，气息也是只进不出。“快，快去医院，孩子不行了。”不顾雪天路滑，李春干一个劲地催促司机。

big NianchuJiu afternoon,a heavy snow can't stop LiXiaoYa a from yancheng JianHu home back to yangzhou.LiXiaoYa grandma just had his 70th birthday,The family is immersed in a festival atmosphere,In just entered Yang city,a sound"My mother help"Let LichunGan heart a tight.See XiaoYa looks pale,breath is not only into the."fast,Go to a hospital,The child can't."Regardless of the slippery snow,LichunGan 1 vigorously urged the driver.

　　“早就知道会有这么一天，没想到会这么快。医生说他很难活过20岁，只要照顾好了，活到18岁还是可以的，怎么会这么快呢？”妈妈李春干低声说道，像是自言自语。“孩子很懂事，平时也乖巧，这还是他第一次喊‘救命’，当时我就知道不好。”

"Early know there will be such a day,I didn't know I would so fast.The doctor said it's difficult for him to live through twenty years of age,as long as take good care of the,Live to eighteen years can,How can so fast?"Mother LichunGan murmured,Like to himself."The child is still,Usually also cleverly,This is the first time he shouted‘help’,at that time I will know that bad."

　　据了解，李肖亚一家是1999年从盐城建湖来到扬州的，那年李肖亚才3岁，爸妈做点小零工能勉强糊口过日子，虽然辛苦但也幸福。2003年春天，7岁的李肖亚开始出现肌肉僵硬，跌倒后要花很长时间才能爬起来，甚至也不如同龄人那般活泼好动。“起初带到医院看，医生只跟我说，趁着年轻再生一个。后来又去外地医院，都是同样的话，‘孩子喜欢什么尽量满足他，能吃就吃，能喝就喝。’”李春干似乎在讲一个别人的故事，低着头，偶尔看看从监护室里出来的护士。

It is understood,LiXiaoYa a 1999 from yancheng JianHu come to yangzhou,That year LiXiaoYa is only 3 years old,Parents do a little odd jobs to live from hand to mouth,although hard but also happiness.In the spring of 2003,The age of seven LiXiaoYa began to appear muscle stiffness,after the fall will take a long time to get up,Even than their peers to be lively and active."at first taken to the hospital to see,The doctor just told me,While young again.Then go abroad to the hospital,are the same thing,‘What children like to meet him,can eat eat,can drink drink.’"LichunGan seems to be telling a story of others,Low head,Occasionally see medicine from out of the nurse.

　　后经肌电图检查，才确诊李肖亚患了罕见的“进行性肌肉营养不良症”。对这个听起来不是很严重的疾病名称，李春干却知道这就是传闻中的“渐冻人”，并且这种病治不好，甚至“通常活不过20岁，而对于家庭不太好的，只能活到18岁。”从那时起，7岁的李肖亚就开始进入了生命倒计时。

The emg examination,LiXiaoYa diagnosed with a rare"Progressive muscular dystrophy".To the sounds not very serious disease name,LichunGan but know this is the speculation"Gradually freezing",and this kind of disease cured,even"Usually live but twenty years of age,For the family is not too good,Only live to eighteen years."From then on,The age of seven LiXiaoYa began to enter the life countdown.

　　

B b

　　

当书童和按摩师 When ShuTong and massage

　　

10年来，她一刻不离儿子 Ten years,Her son from the moment

　　“孩子能笑能说，真的不忍心告诉他真相。所以别的小孩该做的，我们都尽量满足他。”据了解，在小学4年级之前，李肖亚上学、放学都是母亲接送，没办法走路，妈妈就抱着走。这“书童”一当就是4年。“直到小学四年级的时候，病情严重得没办法上学，我们就把他放在租来的小屋里照顾。他爸每

"children can smile can say,Really don't have the heart to tell him the truth.So the other kids do,We all try to meet him."It is understood,In grade 4 before,LiXiaoYa school/Mothers are school shuttle,can't walk,Mother will hold go.this"ShuTong"When is 4 years."Until the fourth grade,Serious illness couldn't go to school,We will put him in a rented a small house to take care of.His father every

　　天出去找零活做，卖菜、卖肉，做运输，我们农村来的，也只能做这些活。”

Day out change jobs,Sell food/Sell meat,Do transport,Our farm,also can only do these live."

　　而李春干为了照顾不能行动的儿子，一刻也不曾离开过出租屋，就连买菜都是丈夫干完活顺路带回来。“我们请不起按摩师，我就学着电视上那样给他翻翻身，捏捏膀子、腿，这10年来，我几乎从未出过门，即使有事，也只是一会就回来。他这种病，就是要经常翻动，一离开就可能出问题。”10年如一日的守候，并没有感动上天，也没有发生奇迹，儿子的病情依旧一天天严重。“已经瘦得皮包骨头，腿也就跟常人胳膊一样粗细，17岁了，只有50斤重。”

and LichunGan in order to take care of not the son of action,Moment never left let,Even buy vegetables are husband done on the way back."We can't afford massager,I would learn the TV that give him to blow over,Squeezed arm/leg,These ten years,I almost never came out,If something happens,Just for a while back.He the disease,Is always turning,Leave may be a problem."Ten years as one day waiting for you,and god did not move,No miracle,Son's illness is serious day by day."Have is only skin and bones,Legs are just like normal people like arm weight,17 years old,Only fifty pounds."

　　就是那一声“妈妈救命”，李春干担心了10年的结果——呼吸肌重度萎缩——最终还是出现在肖亚身上。“那天晚上，我们都没有睡，虽然知道会有这一天，但真的来了还是接受不了。更何况他还没到18周岁，怎么会这么快？”10年来，看着儿子从一个活蹦乱跳的小孩慢慢走向生命尽头，再坚强的父母也接受不了。

Is that a sound"My mother help",LichunGan worry about 10 years results - severe respiratory muscle atrophy, finally appeared in XiaoYa body."That night,We all didn't sleep,although know there will be the day,but really to or can not accept.What's more, he haven't to eighteen years old,How can so fast?"Ten years,Looking at son from a lively child slowly toward the end of life,Then strong parents also can not accept.

　　

C c

　　

孩子生命力逐渐消失 The child vitality gradually disappear

　　

家人决定捐出他的眼角膜 The family decided to donate his cornea

　　“这种病，目前并没有有效的治疗方法，能做的就是相对缓解症状和尽量延长患者生命。即使是科学巨匠霍金，能掌握宇宙起源的奥秘，却也不能阻止自己的生命力一点点消失。”市一院ICU副主任医师柏山介绍。

"The disease,There is no effective treatment,can do is relative to alleviate the symptoms and try to prolong patient life.Even science masters hawking,can master the origin of the universe mystery,but that does not stop his life a little bit of disappear."In a city hospital IcU of doctor of vice director of baiShan is introduced.

　　而早已得知这一切的李春干在儿子的病走到中晚期的时候，显得异常冷静：“如果哪天孩子没了，我们会捐出眼角膜。”据悉，有这一想法也不是突然决定的：“别人通过儿子的眼睛能看这个世界，也一定会看到我们，这就够了。”

and had learned that all these LichunGan in the son's illness went to the mid and late stage,appear abnormal calm:"If which day the child didn't,We will donate cornea."It is reported,Have this idea is not suddenly decision:"Others through the son's eyes can see the world,Will see us,That's enough."

　　昨天下午，李春干已将捐赠眼角膜的意愿向受捐机构提出申请。据了解，今天上午，眼科医生将对李肖亚的眼睛做一次全面检查，如果眼角膜完整、不浑浊，且没有其他问题，即可接受捐赠。“成功的话，世上又多了一个能重见光明的眼疾患者。”

Yesterday afternoon,LichunGan has donated to donate to the cornea by authorities.It is understood,This morning,Eye the doctor will LiXiaoYa eyes do a full inspection,If complete cornea/Don't turbidity,and there is no other problems,can accept donations."successful,The world and many a can bring bright eye disease patients."

　　

【读报词典】 [Newspapers dictionary]

　　

渐冻人 Gradually freezing

　　进行性肌营养不良，俗称“渐冻人”。肌营养不良是一组肌肉组织变性疾病的总称，造成肌肉萎缩、肌肉力弱，出现不同程度的运动障碍。当影响下肢肌肉时，出现上楼、爬坡、蹲下起立困难；波及上肢肌肉时，上肢不能抬举，还可以出现脊柱和关节畸形。由于感觉神经并未受到侵犯，因此这种病并不影响患者的智力、记忆及感觉。像人们熟知的一代理论物理学大师、科学巨匠霍金就是位“渐冻人”。

Progressive muscle malnutrition,commonly known as"Gradually freezing".Muscle malnutrition is a group of muscle tissue degeneration disease body,cause muscle atrophy/Muscle weakness in,appear different degree of movement disorders.When the lower limb muscle influence,appear upstairs/climbing/Squat down it is difficult to stand up;Sweep upper limb muscle when,Upper limbs can't exalt,also can appear spine and joint deformities.as a result of feeling nervous not infringed,So the disease does not affect the person's intelligence/Memory and feeling.as people known as the generation master of theoretical physics/Hawking is a science masters"Gradually freezing".

　　

【同类病例】 [Similar cases]

　　

国内首位剖腹产“渐冻人” The domestic first cesarean section"Gradually freezing"

　　32岁的吕元芳小时候患上脊髓型肌萎缩，这种疾病的患者肌肉会逐渐萎缩无力，最终瘫痪，因此被称为“渐冻人”。一直渴望当母亲的吕元芳怀孕后，今年1月30日，在北京航空总医院成功进行剖腹产手术，产下一名5斤7两的男婴。

32 years old when I was a child suffering from LvYuanFang myelopathic type cervical muscle atrophy,This kind of disease will gradually atrophic muscle weakness,Paralysis of the final,So called"Gradually freezing".Have been eager for when the mother's LvYuanFang after pregnancy,January 30,,Success in beijing aviation general hospital for caesarean operation,Gave birth to a 5 jins and two boys.

　　

【妈妈的心愿】 [Mother's wish]

　　

希望儿子走得轻松一点 Hope son go take it easy

　　“孩子已经走到这一步了，我们并没有特别的心愿，只是希望他能走得轻松一点。” 如今，李肖亚还躺在市一院东区院重症监护室内，面对每天好几千元的住院费，李春干显得有些“有心无力”，“有人劝我将儿子带回家，但是除了那一间出租小屋，我们并没有自己的家，而且房东也不会同意儿子再住进去的。如果回到盐城老家，几千元的救护车费不说，70岁的老母亲也接受不了这样的打击。”

"The child has come to this step,We are not special desire,Just hope he can go to take it easy." now,LiXiaoYa still lying in a hospital, east OuYuan intensive care indoor,In the face of thousands of yuan of hospitalization expenses,LichunGan appear some"Have desire","I was advised the son home,but in addition to that a rent house,We are not home,and the landlord wouldn't agree with son to dwell in.If back to hometown yancheng,Thousands of yuan of the ambulance don't say,The 70 - year - old mother also can not accept such a blow."

　　昨天下午，面对记者的倡导募捐建议，李春干直摆手：“我只希望儿子走得轻松点，并不要很多钱。”住院费难以为继，一家人不知道该怎么办。如果有好心人愿意伸出援手，帮助这个淳朴善良的农村人，给这个17岁的阳光男孩送上最后的温暖，可与本报或与院方联系。(扬州网记者 夏超群)

Yesterday afternoon,In the face of the reporter's advocate the suggestion,LichunGan straight motioning with his hand:"I only hope son go very easy,Don't want a lot of money."Hospitalization expenses unsustainable,The family did not know what should I do.If a man willing to lend a hand,Help the simple kind of rural people,Give the 17-year-old sunshine boy on the last warm,but with this or with the contact.(Yangzhou network reporter Xiachao group)