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男孩患碎骨症 做手术花13万仅能报销6000元(图)--亲稳网络舆情监控室
2012-11-19

  11月1日中午,李其川一家6口回到了位于重庆市黔江区乡下的家,这是李其川和妻子去北京打工7年来第一次回家。和他们一起回家的还有李其川年近七旬的父母和两个“瓷娃娃”儿子。

At noon on November 1,,LiJiChuan a six mouth back to the located at chongqing qianjiang area home in the country,This is LiJiChuan and his wife go to Beijing to work for the first time in seven years to go home.And together they go home and LiJiChuan years nearly parents and two"Porcelain doll"son.

  小儿子李瑞2006年出生在北京,这是他第一次回老家,而李其川的父母和大儿子李江林是去北京5年来首次回家。2007年,当两位老人背着孙子去北京的时候,村里人都叹息:“这个娃儿恐怕是要死在外头了。”

The younger son LiRui was born in 2006 in Beijing,This is his first time back,And LiJiChuan parents and eldest son li j Lin is going to Beijing for the first time in five years to go home.In 2007,,When the two old man son back to Beijing,And sigh:"This ran I'm afraid will die in the outside."

  10岁的李江林已是北京市朝阳区金盏乡皮村同心实验学校四年级的小学生了,但身高和3岁左右的孩子相仿,且只能被人背着行走。李瑞稍微高一些,结实些,放开手可以摇摇摆摆地走几步。两个孩子患的都是一种名叫成骨不全症的罕见病,也叫碎骨症。不知道是谁给这样的孩子取了一个“瓷娃娃”的别名,形容他们像瓷器做的娃娃一样可爱而又易碎。两个孩子现在的情形已经比往年好了很多,这得益于他们从去年以来在天津动的两次手术。

Ten years old li j Lin is Beijing chaoyang district JinZhan township skin village concentric experimental school grade four of the pupil,But the height and 3 years old children similar,And can only be carrying walk.LiRui slightly higher,Strong some,Let go of hand can waddle a few steps.Two children suffer from is a named osteogenesis imperfecta rare disease,Also called broken bone disease.Don't know who to such children took a"Porcelain doll"alias,Describe them like a porcelain doll do as lovely and fragile.Two children now circumstances have a lot better than previous years,This benefits from them since last year in tianjin acting two operations.

  在56网携手“人人公益”发起的“温暖2012”公益行动中,小哥俩的故事被拍成公益微电影《林林和瑞瑞》。了解到他们对回老家看看的渴望后,56网帮他们实现了这个愿望。

In 56 network hand in hand"All public"launched"Warm 2012"Public action,The story of two young brothers was made into a public micro film[Ling ling and red red].To know them to look back for after,56 and help them realize the desire.

  对美好生活的憧憬在孩子一岁半时戛然而止 For the good vision of the life in babies under one year and a half to an abrupt end

  山坡上的家,如今只是一幢年久失修的老木屋,大门敞开着,满地狼藉,仅摆放着两张床架。就算是这个名义上的家也快没有了——村里在征地,李其川已经递交了申请。如果一切顺利的话,他可以得到3000多元的补偿款。

Home on the hillside,Now just a house beat up old cabin,Gate open,Blotch mud,Only putting two bedstead.It is the nominal home also is running out, the village in land expropriation,LiJiChuan has submitted the application.If all goes well,He can get 3000 multivariate badly roughed up.

  33岁的李其川站在屋子中央,低垂着眼睛,很久没有说一句话。

33 years old LiJiChuan standing in the room,Droop eyes,For a long time did not say a word.

  李江林没有父亲的伤感。他说,小时候,爷爷背着他在山上摘过一种紫红色的果子,特好吃,一路上他都在叮嘱大家看着路边还有没有?到了家门前,他执意要大姑把他放下,好去摸摸别人种的老南瓜。菜地旁是坡下面的一间屋子的屋顶,砌了砖蓄了些水。李江林拿着木棍在水里搅和:“咦,我在这里面养了小鱼的,怎么不见了?是不是被人吃了?”

Li j Lin no father's sad.He said,When I was a child,Grandpa cheated on him in the mountains have picked a purple fruit,Special delicious,Along the way he told everyone looked at the side of the road and no?In front of the house,He insisted on elder sister-in-law put him down,Good to touch people kind of old pumpkin.Vegetable field next to the slope of the roof of a house,Build by laying bricks or stones the brick storage some water.Li j Lin took the sticks in the water mix:"yi,I was there have Derek fisher,What happened to the?Are people ate?"

  沉重是大人们的专利。爷爷从老屋乱糟糟的地上捡起了一张照片,那是李江林半岁时的照片,日晒雨淋让照片变得斑驳,但还是能看出那是个眉清目秀、白白胖胖的孩子。

Heavy is the patent of the adults.Grandpa from our old house in a mess of the ground to pick up a picture,That is li j Lin half years old photos,Let the pictures or become mottle,But I still can see that's a handsome/The fair and fat children.

  拍摄这张照片的时候也是全家人最幸福的时光。当时一家人的日子在村里过得很是红火,“不说最好,起码也是大队里的前三嘛。”64岁的奶奶说。

This photo is also the whole family when the most happy time.When the day of the family in the village had a is flourishing,"Don't say the best,At least in the brigade is the first three well."The 64 - year - old grandma said.

  奶奶干活利索,除了种地、种菜之外,还很会养猪,每年都会养8头猪和1头牛。独子李其川初中毕业后外出打工,带回了贵州姑娘邓莲秀,两人婚后便留在家乡打工。到2000年6月,李江林出生的时候,他们已经攒下了十几万元,憧憬着盖一幢新屋。李其川干活之余自己做了5000多块砖,砖是他用石头打碎成粉后加上水泥做的,而石头是邓莲秀每天做完家务后去后山一背篓一背篓地背回来的,每天都要背个20来趟,每次背七八十斤,背了整整一年。

Grandma work agile,In addition to sow the land/Vegetables besides,Is still very will pigs,Every year a eight pigs and 1 head of cattle.LiJiChuan junior high school graduation only after working out,Back to the girl DengLianXiu in guizhou,Two people will stay at home after work.Until June of 2000,Li j Lin was born,They have saved his several hundred thousand yuan,Look forward to building a new house building.LiJiChuan work more than of yourself to do more than 5000 block,Brick is he broken stone into powder added after cement do,And the stone is DengLianXiu finished the housework every day after a panier reckoned a bamboo bag in the back,Every day to take back 20,Every time QiBaShiJin back,Back for a whole year.

  李江林的出生无疑让这个家庭变得更加完美。而这个家庭对未来所有美好的憧憬在李江林1岁半的时候戛然而止。

Li j Lin birth certainly let the family become more perfect.The family for all future vision of the good in li j Lin 1 1/2 to an abrupt end when.

  该走路的李江林根本站不起来,而且一摔倒就骨折。夫妇俩开始背着李江林不停地外出求医问药。但没有人能明确地告诉他们这是什么病。病急乱投医,他们找“大仙”给李江林看过,“大仙”煞有介事地捏把捏把李江林的胳膊,却把他给捏骨折了;他们听了村里人的劝说,请风水先生看了祖坟,重新立了石碑,但李江林的状况却没有好转。

The walk li j Lin don't stand up,And a fall is fracture.The couple began to carry li j Lin kept out the medicine doctor away.But no one can clearly tell them what disease is this.Make rush decisions,They find"Big beetle"Li j Lin to read,"Big beetle"Equally well pinch pinched the the li j Lin's arm,But he gave knead the fracture;They listened to the person in the village of persuasion,Please see Mr. Feng shui the ancestral grave,To make the stele,But li j Lin condition is not improved.

  2005年,花光了所有积蓄后,夫妇俩只能把儿子托付给爷爷奶奶之后去北京打工,为了挣钱,也为了给儿子寻找治疗的机会。

In 2005,,Spent all after savings,The couple can only be entrusted to the son to go to Beijing to work after grandma and grandpa,In order to earn money,Also in order to finding a cure for the son of the opportunity.

  到北京的第二年,邓莲秀生下了小儿子李瑞。在黔江的医院看病时,李其川听一位大夫说过,再要孩子如果是女孩问题不大,如果是男孩的话,到一岁半的时候还不会走路就要小心了。但是对一个健康孩子的渴望还是占了上风。

The second year to Beijing,DengLianXiu gave birth to the younger son LiRui.In the qianjiang when hospital,LiJiChuan listen to a doctor said,And if the child is a girl isn't a problem,If it is the boy's words,To one and a half time has to be careful not to walk the.But for a healthy children desire is still dominant.

  李瑞出生不到20天,夫妇俩就抱着他先后去了北京儿研所和北京儿童医院。他们在北京儿童医院排了3天队才挂到一个专家号,进门就被专家劈头盖脸地教训了一顿:“你们两个大人是不是有毛病呀?孩子这么小就抱着来看什么病?这孩子多漂亮多健康呀,能有什么毛病呀?”

LiRui was born less than 20 days,The couple will embrace he has gone to Beijing ErYanSuo and Beijing children's hospital.They in Beijing children's hospital exhaust for three days team to hang a ZhuanGuHao,The door was experts swept over land have taught a lesson:"You two adults is wrong with ah?Children so small will hold to see what disease?The child is much more beautiful than health ah,Can have what problem?"

  尽管被训了一顿,夫妇俩说不出的高兴。李其林说:“一般人是体会不到我们渴望有个健康孩子的那种心情。大家都说安利的东西好,给孩子吃很补身体。尽管几百元钱一瓶,我们也让孩子吃到一岁多。”李其川已记不得他给孩子吃的东西到底叫什么名字,只记得是药丸状的,当时孩子太小没法吃,就化到水里喂给孩子吃。

Despite being lectured,The couple couldn't say happy.LiJiLin said:"The average person is don't understand we are eager for a healthy children of that kind of mood.Everyone said the amway things good,Give children eat very complement body.Although several hundred yuan a bottle of,We also let the child to eat more than a year."LiJiChuan already remember he give the child to eat things exactly call what name,Just remember is pill shape,When the child is too small can't eat,Will turn into the water to feed the child to eat.

  然而,李瑞一岁半的时候,全家人的梦想再次破灭了,李瑞和哥哥的情况如出一辙。

however,LiRui one and a half,The whole family dream shattered again,LiRui and brother's situation be exactly the same.



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