这是一个鲜为人知的群体，他们比玻璃还脆弱。

This is a little-known group,They were also fragile glass.

　　一次摔跤，一个咳嗽，甚至一个翻身，他们的骨头都有可能因无法承受压力而断裂，他们被称为“瓷娃娃”。

A wrestling,A cough,Even a keel over,Their bones may be unable to withstand pressure and fracture,They are called"Porcelain doll".

　　对于这个群体，广东的医疗体系至今都没有进行过正式的病例统计。究竟有多少病患迟迟找不出病因、无药可医或是医治不起？这一切都是未知数。

For this group,Guangdong medical system so far have not made a formal cases statistics.How many patients can't find the cause/No medicine can cure medical or not?All this is unknown.

　　目前，我国尚未将罕见病治疗方案纳入医保报销目录，而大部分罕见病的治疗药物也因价格高、用量少而没被纳入医保药品目录，因此“瓷娃娃”们巨额的治疗、药物费用只能由患者自己全部承担。

At present,Our country has not yet been will be rare disease treatment into the medical insurance reimbursement directory,And most of the rare disease drug treatment for high prices/Consumption and not be included in the catalog of medicines and medical insurance,therefore"Porcelain doll"The treatment of the huge/Drug expenses only by the patient's own all bear.

　　随着2012年大病医保新政的出台，罕见病急需特效药将逐步纳入医保目录，“瓷娃娃”们的治疗费用有望得到减免。

With the 2012 a serious illness medical insurance New Deal come on stage,Rare disease need specific will gradually into the medical insurance directory,"Porcelain doll"The treatment costs to be abolished.

　　日前，南方日报记者多次走访广州、深圳、惠州等地，接触到部分“瓷娃娃”的案例，走进他们的生活，聆听他们的故事。脆弱的人在谈起病魔带来的伤痛，大多是轻描淡写，而对于明天生活则充满期待。

a,Southern daily reporter visited guangzhou many times/shenzhen/Huizhou, etc,Contact to part"Porcelain doll"case,Into their lives,Listen to their stories.Weak people talk about disease in bring pain,Mostly understatement,For life is full of looking forward to tomorrow.

　　脆弱的“瓷娃娃”们，有着坚强的梦想。

fragile"Porcelain doll"are,Has a strong dream.

　　活着 alive

　　几乎每隔几天就骨折一次，长期离不开绷带和夹板，“保护骨头”几乎成了“瓷娃娃”们活着的唯一目标

Almost every few days is a fracture,Long-term cannot leave the bandage and plywood,"Protect bones"Almost became"Porcelain doll"The only target the alive

　　与记者见面时，家住深圳龙岗的何志强刚剪了一个平头，显得很有精神。他黑色短裤下露出的小腿，上面有两道明显的疤痕，从膝盖一直延伸到小腿末端。

When they meet with reporters,Live in shenzhen longgang of HeZhiJiang just cut a flat,Appear very spirit.His black shorts out under the calf,It has two obvious scar,From knee has been extended to the end calf.

　　这是何志强在18岁那年做了大手术之后留下的。当时医生为了使他那已经弯曲变形的骨头变直，切开他的两边小腿，安进钢针辅助小腿固定并矫直。

This is HeZhiJiang in 18 years old do the left after surgery.At that time the doctor in order to make his already bending deformation bones straightened,Cut the both sides of his leg,Amgen steel auxiliary crus fixed and straightening.

　　今年41岁的何志强，身高只有90厘米。他有着成人一般的脑袋和容貌，身体却如小孩般细小，而且手臂关节、肩胸骨以及脚踝都严重变形。见到他时，他笑说自己“最近胖了”，但他的体重从未超过40斤。

41 years old this year HeZhiJiang,Height is only 90 cm.He has an adult head and looks,The body is like a small child,,And arm joint/Shoulder sternum and ankle are serious deformation.See him,He said, laughing his"Recent fat",But his weight never more than 40 catty.

　　出生3个月，何志强被确诊为成骨不全症。9岁那年，和小朋友玩耍，何志强摔倒在地，断了两根骨头。他深受打击，尽管这个事实已经陪伴了他九年。

Was born three months,HeZhiJiang was diagnosed with osteogenesis imperfecta.The age of 9,And children play,HeZhiJiang fell to the ground,Have two broken bones.He deeply shocked by,Despite this fact has accompanied him nine years.

　　曾经，妈妈用布条把何志强绑在自己背上，结果折断了他的骨头。13岁那年冬天，何志强和奶奶一起盖大棉被，结果翻个身又折断了3根骨头。

once,Mother wrapped HeZhiJiang bind on their back,Results broken his bones.13 years old winter,HeZhiJiang and grandma together cover large quilt,Results over the body and broken 3 bone.

　　在生命的前20多个年头里，他几乎每九天就骨折一次，甚至打个喷嚏肋骨都会断，长期离不开绷带和夹板。到了23岁左右，何志强才进入青春期，这时他的骨头才逐渐变硬，身体状况渐趋稳定。

In the life of more than 20 years before,He almost every nine days a fracture,Even sneezes frame will be broken,Long-term cannot leave the bandage and plywood.In 23 years old or so,HeZhiJiang only enter into adolescence,At this moment his bones to hard gradually,Physical condition gradually stable.

　　父母对何志强一直不离不弃。只要听到哪里有好的民间医生，他们便会马上带儿子去。父母的爱，何志强都看在眼里，也逐渐明白：自己安好无恙，对父母是一种宽慰，也是回报。于是“保护骨头”几乎成了何志强活着的唯一目标。

The parents HeZhiJiang followed him.As long as hear where there is good folk doctor,And they'll take my son to go.The love of parents,HeZhiJiang see in the eye,Also gradually understand:Himself well safe,To parents is a kind of relief,Also return.so"Protect bones"Almost became the only goal HeZhiJiang alive.

　　“骨折习惯了，我自己都会包扎。”何志强很是得意。常年骨折让他熟识了各种情形的骨折，是软组织创伤、骨裂还是折断，他都能马上感知。

"Fracture accustomed to,I myself will bind up."HeZhiJiang is very satisfied.Perennial fracture let him know all sorts of circumstances of fracture,Is soft tissue trauma/Bone crack or break,He can immediately sense.

　　相比何志强，广州的刘志勇病情较轻，但平均一年两次骨折的频率，依旧是难以忍受的痛苦。“大概6岁的时候，我都有自杀的念头了。”刘志勇回忆起当年，痛苦的感觉依旧清晰。

HeZhiJiang compared,Guangzhou LiuZhiYong the illness is lighter,But the average twice a year the frequency of the fractures,Is still unbearable pain."About six years old,I have the thought of suicide."LiuZhiYong recall the,The feeling of pain is still clear.

　　刘志勇是2岁半的时候才发现患了脆骨症的。4月龄时，妈妈帮他洗澡，曾发现他的手臂像面包一样肿，当时也没太在意，因为刘志勇没有哭，也没多大反应。

LiuZhiYong is 2 years old of half when it was discovered that had cartilage disorder.When 4 months,Mother bathed him,Once found his arm like bread is swollen,At that time, didn't have too care about,Because LiuZhiYong did not cry,Also didn't react to it.

　　在发现得病之前，这是个平静祥和的家庭。据龚妈妈回忆，刘志勇半岁时，人家逗他，让他吹口哨，他就真的吹出来了。到了刘志勇1岁多，过年时亲戚们互相走访，听到别人拜年，他也有模有样地学话：“恭喜你发财！”当时家人都很惊讶。

Before the discovery of sick,This is a quiet and peaceful family.According to kung mother recall,LiuZhiYong half years old,Somebody else to make his,Let he whistled,He really blew out.The LiuZhiYong more than 1 year old,When New Year relatives visit each other,Hear others pay New Year call,He also YouMoYouYang learn words:"Congratulations you rich!"When family members are very surprised.

　　“2岁时，他就懂得跟我说：妈妈，你不用给我买吃的，买多些笔和本子给我写字。”说起这些，龚妈妈如数家珍。

"At the age of 2,He know say with me:mother,You don't have to buy me to eat,Buy more pen and notebook to write to me."Speaking of these,Kung mother, as he sees them.

　　惠州惠东的黄冬娇，一个已成年的“小女孩”。自1991年出生至今，她已有21岁；但她还是“小女孩”的模样，就像一个初中生，事实上，她的确还在读初中。

Huizhou huidong of HuangDong charming,An adult"The little girl".Since 1991, since birth,She has 21 years old;But she still"The little girl"appearance,Like a junior high school student,In fact,She is still in the junior middle school.

　　冬娇在家排行老二，在她之前有一个大一岁的姐姐。冬娇出生后，父母有了生第三胎抱个男孩的想法。然而弟弟的出生，并没有让家人高兴很久。父母发现，老三一直很虚弱，感冒、发烧成了家常便饭。不久，老四紧接着来到了世上。

Winter charming home ranking second,Before her have a one year older sister.Winter charming after birth,Parents have the third fetal birth embrace a boy's idea.But brother's birth,And didn't want to let the family happy for a long time.Parents find,Old three have been very weak,cold/Have a fever a potluck.soon,Old four then came to the world.

　　最小弟弟的出生，父母本以为可以轻舒一口气了。不料，不久后大姐的一次骨折，以及随之而来弟妹们陆续的骨折，打破了这个家庭美好的幻想。

Minimum brother's birth,Parents thought can light the relieved.behold,Sister soon a fracture,Along with the help of the fractures in succession,Break the family good fantasy.

　　冬娇是4个孩子中骨折次数最多的，身上共有18处骨折。据母亲回忆，第一次骨折是在她3岁时。当时只是让土医生接接骨、敷点草药就完事了。夏天天热，伤口发炎，和着草药，蛆虫不时从伤口处爬出。

Winter charming is four children in the fracture of the most times,Body has 18 fractures.According to the mother recall,The first fracture is in her three years old.At that time only let soil doctor joint bone/Apply some herbs and gets the job done.Summer day heat,Wound inflammation,With herbs,Maggots from time to time climb out from the wound.

　　求学 school

　　到了上学的年龄，瓷娃娃们普遍遭遇到不公平的待遇，他们中的大多数丧失了学习的机会，逐渐与社会脱离

To go to school age,The common thing happened to unfair treatment,Most of them lose the opportunity to learn,Gradually and society from

　　到了上学的年龄，刘志勇遭到了不公平的待遇。校方担心刘志勇在学校受伤责任过大，要求刘志勇只能留在家里自学，学费照交。

To go to school age,LiuZhiYong suffered unfair treatment.Officials worry LiuZhiYong in school injured too much responsibility,LiuZhiYong can only stay at home for self-study,Tuition according to pay.

　　“从一年级到四年级，他都是这么自学过来的。”龚妈妈指着家里的一台影碟机称，刘志勇没法去学校上课，她自己没文化，就只能买来教学相关的光盘辅助刘志勇自学。偶尔也会有老师或同学上门辅导。考试的时候就到学校领试卷，带回家让刘志勇做完了再交还老师。

"From grade one to grade four,He is so self-study come over."Kung mother points at the home of a DVD says,LiuZhiYong couldn't go to school,She have no culture,Can only buy relevant teaching CD auxiliary LiuZhiYong self-study.Occasionally there will be teachers or classmates the door counselling.Examination of the time to get to school brought papers,Home let LiuZhi 勇做 over again return the teacher.

　　慢慢地越往上读，自学的难度越来越大。龚妈妈多次向学校反映，终于到五年级时，刘志勇如愿进入了校园。由于行动不便，龚妈妈当起了全陪。

Slowly up the reading,The difficulty of self-study is more and more big.Kung mother several times to the school reflect,Finally to five grade,LiuZhiYong fulfill a wish to enter the campus.Due to the action inconvenience,Kung mother worked as a whole to accompany.

　　学校的生活并不都是愉快的。“我一转身不注意，有些小孩就会拿粉笔丢阿勇。”回忆起这些细节，龚妈妈有些心酸。

The school life is not always pleasant."I turned around do not pay attention to,Some children will get lost chalk, yong."Remember these details,Kung mom some feel sad.

　　倒是刘志勇看得开，“那些过去的我也记不得了，不要太在意就好。”

It is LiuZhiYong see more open,"Those who in the past and I can't remember,Don't care too much about good."

　　刘志勇现在已经进入广州涉外经济技术学院读书，学校老师都很关心他，同学也经常帮他，这让他很感激。

LiuZhiYong now have entered the guangzhou foreign economic and technical college,School teachers are very concerned about him,The students often help him,This makes him very grateful.

　　冬娇只比刘志勇小1岁，直到2001年，她才终于上学。一直以来，亲戚们都说，等长大一些骨头变硬了才适合上学。

Winter charming than LiuZhiYong small only 1 year old,Until 2001,She finally to go to school.Has been,Relatives said,Grow up, such as some bones harden the just suitable for school.

　　“我不想一直待在家里，我想去学校。”尽管身体很“脆弱”，冬娇还是更愿意走出去。好在父亲也支持，“怎样都要上学的啊，不然真成废人了。”

"I don't want to stay at home,I want to go to school."Although the body is very"fragile",Winter charming or more willing to go out.Fortunately father also support,"How to go to school,Not really into the case."

　　学校里，有她最喜欢的语文课，也能和好朋友聊天说笑话。但是学校生活也会带给她不开心。

school,Her favorite Chinese classes,Good friends can also chat jokes.But the school life will also bring her unhappy.

　　她说，别的小孩会嘲笑她是“玻璃骨”；或是一见着她就躲远了；甚至有些男生会拿小石头丢她。

She said,The other kids will laugh at her is"Glass bone";Or a saw she hide away;Even some boys will take small stone throw her.

　　冬娇说，她努力地不理会、不生气。“这个病也不是我选择的。”但是她还是没法不在意同学们鄙夷的眼神，心酸、难受一直伴随着她。

Winter jiao said,Her efforts to ignore/Don't be angry."This disease also is not my choice."But she still can't don't care the classmates contempt of look in the eyes,Feel sad/And it has been faithfully accompanying her sad.

　　在学校，老师对她挺好，但是最让她内心难受的一次经历也是老师给的。

In the school,The teacher is good for her,But the most let her heart afflictive an experience is also the teacher give.

　　一次语文课上，老师教到了“炽痛”这个词，对冬娇说：“你应该最了解这种感觉，说说是怎样的？”冬娇一时语塞。

Once the Chinese classes,The teacher taught the"Brilliant pain"The word,Jiao said to winter:"You should know best this feeling,Say that is what kind of?"Winter charming the cat got her tongue.

　　冬娇的求学路也是坎坷连连。2003年，冬娇在无围栏的楼梯上踩空跌断了小腿，休学两年。

Winter jiao study road is bumpy repeatedly.In 2003,,Winter charming in the absence of the fence on the stairs trample empty fell and broke his leg,Away from school for two years.

　　2006年，刚回学校不久的她又经历了一次严重的摔伤：大腿骨折，肩关节脱臼，再次休学两年。

In 2006,,Just go back to school soon and she experienced a serious hurt:Thigh fracture,Shoulder joint dislocation,Once again away from school for two years.

　　何志强跟刘志勇和冬娇不一样，除了外出看病的时间，他就没再出过门了。没有上过学，也没有任何朋友，甚至连字都不识一个。

HeZhiJiang with LiuZhiYong and winter charming is not the same,In addition to the doctor out of time,He hasn't out of the house.Didn't go to school,Don't have any friends,Even a word not to know.

　　父母都去工作，只剩他一个人在家的时候，他就躺在床上睡一整天的觉。要么就玩弄些小东西，比如一个乒乓球、一群小蚂蚁，或是一本小人书。只要找到了一个目标，他就能玩上好多天，甚至好多年。

All the parents go to work,Only he a person at home,He lay down on the bed to sleep all day.Or play with small things,For example a table tennis/A group of ants,Or a picture book.As long as found a target,He can play many days,Even for many years.

　　这样的生活他过了31年，直至2003年他拨通了深圳义工服务队的电话。这时的他身体状况趋于稳定，骨头里的钙质上升到了80%左右，已经很少骨折了。

Such a life he had 31 years,Until 2003 he dialed shenzhen volunteer service telephone.At this moment his physical condition tends to be stable,The bone calcium rose to 80%,There are very few broken.

　　他渴望交到朋友。

He is eager to make new friends.

　　很快，便有来自深圳罗湖的义工前来看望他，这是他第一次这么近距离地与外人接触。阿辉、阿兰、阿娟……说起这些义工的名字，何志强至今还牢记在心。他还记得有人陪他下棋，陪他聊天，教他识字。

soon,There is from shenzhen lo wu volunteers to come to see him,It was the first time he so close contact with outsiders.hui/Alan/Juan o...Speaking of these volunteers name,HeZhiJiang still bear in mind.He also remember someone accompanied him to play chess,Chatting with him,Taught him to read.

　　义工们每周至少花4天的时间教何志强识字，看到他们那么辛勤地付出，何志强第一次有了动力去学习，甚至有一天他读了17小时的报纸，后来他还读了《三国演义》、《孙子兵法》。

Volunteers take at least four days a week time teach HeZhiJiang literacy,See them so hard to pay,HeZhiJiang, for the first time, have the power to learn,There was even a day he read 17 hours of newspapers,Later he also read[The romance of The Three Kingdoms]/[The art of war].

　　终于到了何志强走出去的时候。当别人向他投来诧异、害怕甚至嘲笑的眼光时，他说他并不在意，反而觉得是自己长得不够靓，吓到别人。

Finally arrived HeZhiJiang go out.When someone to he throws to surprise/Be afraid even laugh at the eye,He said he didn't care,Instead, think it is their long enough beautiful,Scare others.

　　他甚至说了一句颇有哲理的话：“理解是相对的，需要时间，了解过后没有隔阂，才不会害怕。”

He even said 1 quite have the words of philosophy:"Understanding is relative,Need time,After understanding no gap,Won't be afraid."