一对小哥弟，都是“瓷娃娃” 名字很美，现实却很残酷 A pair of small GeDi,are"Porcelain doll" Is a beautiful name,The reality is cruel

这是一种罕见的脆骨病 This is a rare cartilage disease

为了治病，一家人漂泊北京5年 重庆晚报和志愿者送他们回家 In order to cure,The family drifted Beijing five years chongqing evening news and volunteers to send them home

　　哥哥李江林，10岁，弟弟李瑞，6岁，兄弟俩都患有一种罕见病———成骨不全症，又称脆骨病，他们稍不留神就会骨折，像可爱却脆弱的瓷娃娃。

Brother li j Lin,10 years old,Brother LiRui,6 years old,The two brothers are suffering from a rare disease -- osteogenesis imperfecta,Also called cartilage disease,They didn't watch it will fracture,Like lovely but fragile porcelain doll.

　　2007年，为了给孩子治病，一大家人租住在北京城中村一间平房里，父母一边打工，一边给孩子求医。因为缺钱，加上两个孩子行动不便，一家人再也没有回过黔江老家，“逢年过节，特别想回家看看。”

In 2007,,In order to give the child cure,A large family lodges in a bungalow in the village of Beijing,Parents work side,Side give children seek medical advice.Because of lack of money,Add two children action inconvenience,The family never return hometown qianjiang,"holiday,Special wanted to go back home to see."

　　今年11月1日，在56网举办的公益活动彩虹计划“温暖2012”的帮助下，重庆晚报记者和志愿者们一起，送他们回家。

This year on November 1,,In 56 network held public welfare activity rainbow plan"Warm 2012"Under the help of the,Chongqing evening news reporters and volunteers together,Send them home.

回家的路太漫长 The way home too long

“5年了，我们总算回来了” "Five years,We managed to come back"

　　“我们老家山路十八弯，不好走得很。这次回来，很多人都劝我们放弃。”33岁的李其川看上去比实际年龄大很多，脸上是劳累与贫苦积压下的黑黄色。

"Our hometown mountain 18 bending,Not go very.The back,Many people have advised us to give up."33 years old LiJiChuan looks old for her age many,Face is tired and poor backlog of black yellow.

　　“我要回老家，我是在那里出生的。”李其川怀里的大儿子林林大声说。他看上去只有三四岁，说话的神态、语气却俨然一个小大人。

"I want to go home,I was born there."LiJiChuan bosom eldest son ling ling said with a loud voice.He looks only three or four years old,Speaking manner/Tone is peremptory a grownup.

　　“我是在北京生的，我从来没回过老家。”小儿子瑞瑞蜷在母亲邓莲秀怀里，大眼睛、小酒窝，长得像个洋娃娃。

"I was born in Beijing, actually,I never back home."The younger son rui rui up in the mother DengLianXiu bosom,Big eyes/Small dimple,Looks like a doll.

　　经过再三考虑，一家人终于下定决心回家。

After careful consideration,The family finally decided to go home.

　　10月31日从北京飞到重庆，从主城包车到黔江，在宾馆住一晚，再坐车到离黔江县城四十多公里的黑溪镇白石乡，“到了乡里就得爬稀烂的山路了，两个孩子怕是只能在山下看看。”李其川很是担心地说。

October 31 flew from Beijing to chongqing,From the city charter to qianjiang,In the hotel for one night,Ride again from the qianjiang county more than forty kilometers of black creek town white stone township,"The village will have to climb the mountain him,Two children afraid only under the mountain to see."LiJiChuan is very worried about that.

　　没想到，5年来家乡发生了很大变化。11月1日上午，车停在白石乡公路上，陡峭的山壁上已经修了一条盘山公路，小车可以通行。

Didn't expect,Five years great changes have taken place in my hometown.On November 1 morning,Car in a white stone township highway,Steep mountain has taken on a circle highway,Car can passing.

　　“几千公里的路，5年了，我们总算回来了。”望着他曾经熟悉的大山，李其川说。

"Thousands of kilometers of road,Five years,We managed to come back."Looked at him once familiar dashan,LiJiChuan said.

捧在手心怕碎了 Hold in the palm afraid of broken

10岁已骨折五六十次 10 years old already fracture of times

　　2003年，李其川和妻子到北京打工。

In 2003,,LiJiChuan and his wife to Beijing to work.

　　这一年，1岁半的林林在老家学走路时突然腿部手部骨折。“送到医院包扎，几天就恢复了，但没过几天其他地方又骨折了。”他们发现，孩子不是普通的骨折，是一种他们从来没见过的病。

This year,1 1/2 ling ling in their hometown learning to walk, he suddenly leg hand fracture."Bind to the hospital,A few days will restore the,But no other place a few days and the fracture."They found that,The child is not ordinary fracture,Is a kind of they have never seen disease.

　　听说北京有医院能看孩子的病，夫妇俩决定在北京长住下来。2005年，爷爷奶奶也离开老家，到北京照顾孙子。2006年，他们又要了一个孩子。李其川说：“农村人没啥文化，就想着一定要生个健康的孩子。”

I heard that Beijing has a hospital can see children's disease,The couple decided to stay down in Beijing.In 2005,,Grandpa's grandmother also leave their hometown,To Beijing to take care of grandchildren.In 2006,,And they asked for a child.LiJiChuan said:"Rural people do not have what culture,Just want to have to give birth to a healthy children."

　　老二长得好看极了，人见人爱，可一年后也出现了同样的症状，也得了脆骨病。

Old two looks fantastic,Everyone who saw her had to love,But a year later also appears the same symptoms,Also got cartilage disease.

　　2007年，他们卖掉了老家的全部家当，举家搬到北京打工、求医。

In 2007,,They sold their hometown whole fortune,Moved to Beijing to work/seek.

　　“俗话形容大人宠爱娃娃，就是捧在手心怕碎了。我们这两个娃娃，还真的是怕他们碎了。”李其川说。看着别的孩子活蹦乱跳的，两个孩子也想走路，大人拗不过，护着他们走一走，一不留神摔倒了，就得送医院；在家里洗澡，把孩子放在一个大盆里，冲水、擦拭，动作柔和得像抚摸，却还是可能让孩子痛苦地哭起来。10岁的林林，到现在大概骨折了五六十次。

"They describe adult pet baby,Held in the palm is afraid of broken.We the two dolls,Also is really afraid of them broken."LiJiChuan said.Look at other children alive and kicking,Two children also want to walk,Adult ao however,Guard them for a walk,Accidentally fell down,Have to send a hospital;Take a shower in the home,The child in a large bowl,Blunt water/wipe,Action soft like touch,Still can let the child cried painfully.Ten years old ling ling,Now about the fracture of times.

“摇篮”里上课 "cradle"classes

他考了全班第一名 He got the first prize

　　李其川一家租住在北京五环外一个叫皮村的城中村，一家六口人挤在20多平方米的房子里，用木板隔成两间房，没有暖气。夫妇俩都在附近的工地上做零工，最开始一个月只能挣三四百元，现在李其川一天能挣一百多元，一个月能干20天的活，“附近的人知道我们的情况，一有活儿就优先喊我们去。”

LiJiChuan a lodges in Beijing rings outside a call skin village villages,A six people crowded in more than 20 square meters of the house,With board was partitioned into two rooms,No heating.The couple are near the site of the job,The beginning a month can only earn - yuan,Now LiJiChuan one day can earn one hundred yuan,A month do 20 days of live,"Nearby people know our position,A work is priority shout we go to."

　　2009年，7岁的林林吵着要上学，夫妇俩挨家挨户找学校。一听说孩子的情况，没有一个学校愿意收。“我小学三年级都没读完，再怎么困难，也得让孩子读书。”邓莲秀说，后来农民工子女学校———皮村同心试验学校接受了林林。现在，瑞瑞也进入这所学校，学校减免了学费。

In 2009,,The age of seven ling ling noisy want to go to school,The couple from house to house to find the school.A heard the child's condition,No one school are willing to accept."I haven't finished reading the primary school is grade three,Again how difficult,Also get to send their children to school."DengLianXiu said,Then the children of peasant workers school -- skin village concentric test school accepted the ling ling.now,Red red also enter the school,School breaks the tuition.

　　林林坐在教室的最后一排。他的“课桌”有些特别，桌椅一体，外形像个摇篮，是李其川打工的铁艺厂老板特别打造的。下课了，同学都跑到操场上疯玩，林林只能安静地坐在摇篮里，等着奶奶抱他出去走一走。

Ling ling sitting in a classroom of the last row.his"The desk"Some special,Tables and chairs a,Looks like a cradle,Is LiJiChuan work, wrought iron factory boss made special.Class is over,The classmate all run to the playground to play mad,Ling ling can only quietly sitting in the cradle,Waiting for my grandma embrace he go out for a walk.

　　奶奶是兄弟俩的陪读。上课时，奶奶就在教室外守着。下课铃一响，她就轮流带着兄弟俩上厕所、外出活动。

Grandma is the two brothers or relatives can apply for.class,Grandma will keep outside classroom.When the bell rang,She take turns with the brothers toilets/Out activities.

　　“林林特别聪明，一直是班上的前几名。”邓莲秀说，去年一次骨折，林林一学期只上了一个多月课，期末考试，他考了全班第一名。

"Smart ling ling,The class is always the top."DengLianXiu said,Last year a fracture,Ling ling a semester on the only more than a month class,The final exam,He got the first prize.

　　林林说：“只能算可以吧。以后我要考大学，等我能走路了，还要找工作。”

Ling ling said:"Only is ok.Then I will take an examination of university,I can walk,Also looking for work."

起跑的姿势 Starting position

“但愿18岁后，他们真能走路” "I hope after 18 years old,They could walk"

　　听说林林和瑞瑞回来了，黔江老家村里的人都出来迎接。

Heard that ling ling and red red back,Qianjiang hometown people in the village all came out to meet.

　　李家的土房早已经变成废墟，李其川和家人只能住在亲戚家里。

The lees adobe have become ruins,LiJiChuan and family can only live in relative's house.

　　两个孩子好像忘了痛苦，一路上笑声不断。“看，小河，河里有鱼。路边的小果子叫刺梨，我3岁的时候吃过。”林林像大人似的感叹：“怪不得人人都说家乡好啊！”瑞瑞则好奇地睁大眼睛到处看。

Two children seem to forget the pain,All the way full of laughter."see,stream,With fish in the river.The small fruit called thorn pear,I 3 years old when eaten."Ling ling like adults similar exclamation:"No wonder everyone says home well!"Red red is curiously zheng big eyes looked everywhere.

　　邓莲秀说，在北京，他们很少出去玩，因为出去只能挤公交车，怕把孩子挤坏了。

DengLianXiu said,In Beijing,They seldom go out to play,Because out only crowded bus,Fear of the child get broken.

　　村里人爬上树给两个孩子摘桔子，林林和瑞瑞都兴奋了，吵着要自己去摘。“我们要走路！我们要爬树！”林林挣脱爸爸的手，一条腿半跪在地上，大声喊道：“看！这是起跑的姿势！我要起跑了！”

And climbed up the tree to two children pick oranges,Ling ling and red red the was sober enough,Cry for yourself to pick."We have to walk!We want to climb a tree!"Ling ling from dad's hand,A leg half kneeling on the ground,shouted:"see!This is the starting position!I want to start the!"

　　所有人都被逗乐了，李其川也跟着笑。他说：“但愿到18岁以后，他们真的就能自己走路。”

Everyone was amused,LiJiChuan also follow smile.He said:"I wish to 18 years old later,They really can walk on his own."

　　他说，现在孩子在天津一家医院治疗，一年输三次增加骨密度的药物，要花1.5万元左右。孩子18岁之前，每两~三年就要做一次手术，一次要花10余万元，输液还要视身体状况持续到更久的时间。在老家待两天，一家人又要返回北京，继续打工、治病、还债。

He said,Now that the children are treated at a hospital in tianjin,A NianShu three times increase BMD drugs,To spend 15000 yuan.The child before the age of 18,Every two to three years will do an operation,A secondary spend more than 10 ten thousand yuan,Infusion inspects health continued to a long time.In their hometown for two days,Family and to return to Beijing,Continue to work/cure/debts.

　　“再苦再累，也是我这个做爸爸的责任。是很难，但是毕竟一家人能生活在一起。”李其川笑着说。

"Again painstakingly again tired,Is the father's responsibility.Is difficult to,But after all the family can live together."LiJiChuan said with a smile.

全国有10万瓷娃娃 The national 100000 porcelain doll

　　成骨不全症，又称脆骨症，患有脆骨症的群体被称为瓷娃娃，特征为骨质脆弱、蓝巩膜、耳聋、关节松弛，身材矮小等。

Osteogenesis imperfecta,Also called cartilage disease,With cartilage disease group called porcelain doll,Features for bone fragile/Blue sclera/deafness/Joint relaxation,Short stature, etc.

　　昨日，重庆晚报记者联系上在北京的瓷娃娃罕见病关爱中心。中心创办人王奕鸥本身就是一位瓷娃娃。她介绍，脆骨症是一种罕见病，全国约有10万人患这种病。

yesterday,Chongqing evening news reporter contact in Beijing on porcelain doll rare disease care center.Center founder WangYiOu itself is a porcelain doll.She introduces,Cartilage disease is a rare disease,There are about 100000 people across the country to develop the disease.

　　2007年5月，王奕鸥与另一名瓷娃娃共同发起成立了瓷娃娃关怀协会，旨在为成骨不全症等罕见病群体建立平等、受尊重的社会环境。通过中心的努力，现在18岁以下的瓷娃娃可以到中心申请报销部分医药、手术费。对林林和瑞瑞兄弟俩，中心也给予了帮助。

In May 2007,WangYiOu and the other a porcelain doll jointly sponsored and established a porcelain doll care association,Aimed at for osteogenesis imperfecta rare disease group establish an equal/Respected social environment.Through the efforts of the center,Now 18 years old the following thing can apply for to submit an expense account to the center part of the medicine/operation.To ling ling and red red brothers,The center also gives the help.

　　“希望社会能给予这个群体一些关注，他们身体脆弱，但他们的爱不脆弱。”王奕鸥说。(记者 谈露洁 摄影报道)

"Hope society can give this group some attention,They the body vulnerable,But their love is not weak."WangYiOu said.(Reporters about dew clean photojournalism)