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北京图片,移植图片,离婚图片,单亲妈妈4岁娃基因缺陷患罕见病?

2020-1-9 10:02| 发布者: admin| 查看: 23| 评论: 0

摘要: “这三年我只做了一件事,就是给孩子看病,所有的苦难我们都经历过,幸运的是孩子的情况越来越好了。”胡婷婷看着女儿平静地说。三年前,胡婷婷的女儿尚雪得了恶性骨质硬化症(石骨症),这是一种少见的骨发育障碍性 ...
“这三年我只做了一件事,就是给孩子看病,所有的苦难我们都经历过,幸运的是孩子的情况越来越好了。”胡婷婷看着女儿平静地说。三年前,胡婷婷的女儿尚雪得了恶性骨质硬化症(石骨症),这是一种少见的骨发育障碍性疾病,常为家族性隐性遗传,其有效的治疗途径只有造血干细胞移植,治疗费用高得惊人。恶性型石骨症如果得不到有效的治疗,大部分病人无法活过童年。点击【挽救尚雪失明的双眼】进入腾讯公益帮助她。 胡婷婷,今年30岁,来自安徽亳州,2013年经人介绍与同一个镇的男青年尚某结婚,婚后2年女儿尚雪出生。可就在2017年2月份尚雪病倒了,夫妻俩带着孩子四处求医一年花光了家里的积蓄,病情却越来越严重。2018年3月28日,在北京儿童医","activity":{"activity_id":3272,"activity_name":"图文|人间万象","activity_type":1,"end_time":"2020-07-01 09:41:19","income":0,"start_time":"2020-01-08 09:41:19"},"alt_time":"2020-01-09 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“这三年我只做了一件事,就是给孩子看病,所有的苦难我们都经历过,幸运的是孩子的情况越来越好了。”胡婷婷看着女儿平静地说。三年前,胡婷婷的女儿尚雪得了恶性骨质硬化症(石骨症),这是一种少见的骨发育障碍性疾病,常为家族性隐性遗传,其有效的治疗途径只有造血干细胞移植,治疗费用高得惊人。恶性型石骨症如果得不到有效的治疗,大部分病人无法活过童年。点击【】进入腾讯公益帮助她。<\/P>

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胡婷婷,今年30岁,来自安徽亳州,2013年经人介绍与同一个镇的男青年尚某结婚,婚后2年女儿尚雪出生。可就在2017年2月份尚雪病倒了,夫妻俩带着孩子四处求医一年花光了家里的积蓄,病情却越来越严重。2018年3月28日,在北京儿童医院,尚雪最终被确诊为骨质硬化症(石骨症)。这病对于他们一家人来说闻所未闻,尚雪父母双方的亲戚都一致反对继续治疗,只有妈妈胡婷婷坚持要继续治。<\/P>

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石骨症是一种少见的骨发育障碍性疾病,常为家族性隐性遗传。尚雪确诊是石骨症后,胡婷婷和老公也赶紧做了基因检查,结果发现妈妈胡婷婷是遗传基因携带者。“如果我早知道自己携带遗传基因,我这辈子都不会结婚生子的。我输了婚姻,但是孩子赢得了新生,那我的人生就不算输,一切都是值得的,不是吗?”胡婷婷哭着对来访者说。可现在对于她来说,尚雪是她生活唯一的奔头,也是她从今往后唯一做母亲的机会。<\/P>

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知道胡婷婷携带着致病基因后,她的公公大吼着对她说:“你要救你女儿就必须跟我儿子离婚,以后的债务跟我们一点关系也没有。别拖累我儿子,也别耽误我抱孙子!”公公想通过让她离婚规避债务风险的做法让尚雪十分绝望。然而让她更心寒的是,最终连丈夫也选择了放弃女儿。胡婷婷和老公结婚后一直没领结婚证,这种事实婚姻在当地农村常见,为了向公益组织救助给尚雪筹集治疗费,胡婷婷拽着老公于2018年5月23日领了结婚证,给尚雪办理了户口。可是爸爸认为尚雪治不好了,领完证第二天就和胡婷婷办理了协议离婚。尚雪父母法律意义上的婚姻,因为尚雪的重病,戏剧化地只维持了一天。<\/P>

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“离就离,只要你们不要阻止孩子爸爸捐骨髓!能救孩子怎么都行!”胡婷婷认为,就算离了婚,丈夫也不会丢下她们娘俩不管。成了单亲妈妈的胡婷婷,拿着向高利贷借的5万元,开始了艰难的北漂求医生活。尚雪患病三年以来,她带孩子睡过医院走廊,甚至沿街乞讨,历尽艰辛。<\/P>

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骨质硬化症并发症之一就是下颌骨骨髓炎,当时尚雪感染严重,连续高烧20多天。下颌骨反复感染已经造成部分骨头坏死,医生说不处理好坏死的骨头,就没办法根治,根治不了就会反复化脓感染危及生命,也就意味着骨髓移植手术要推迟。2018年6月28日医生给尚雪做了“刮骨手术”,我们都听过“关羽刮骨疗伤”的故事,而尚雪接受的手术跟这个故事所说的大体相同,把坏死的骨头硬生生的刮掉。<\/P>

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“刮骨手术后,孩子推出手术室时已经清醒,痛哭崩溃一声声喊着妈妈我疼啊。我找主任沟通求他想想办法,当时疼痛评估10级,医生说已经开了吗啡止痛,但是必须术后4个小时才能用,孩子硬生生的扛了4个小时。我每次回想起来都难受到不行,好在现在都熬过来了。”胡婷婷皱着眉头痛苦的说道。<\/P>

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2018年12月17日,按照离婚时的协议,父亲为尚雪捐了骨髓,进行了骨髓移植手术,至今已经移植一年,抗排异抗感染顺利,按计划开始减药,定期住院复查。移植后6个月复查骨骼硬化程度降低,最近一次复查已经可以看到骨髓腔边缘,慢慢的形成新的骨髓腔,造血功能恢复良好,骨骼发育逐渐趋于正常。身高,智力,体能等逐渐快速发育。胡婷婷把当初所有人认为的不可能变成了可能。<\/P>

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但是尚雪目前最大的问题是眼睛几近失明,是原发病导致的视神经萎缩。移植4个月后,胡婷婷发现尚雪的视力一点也没有好转,找东西或递给她东西时全靠摸。当胡婷婷知道孩子看不见后,恨不得时时刻刻守护在她身边。“最心痛的是我就在她对面,她却看不见我,不时要喊一句‘妈妈呢?’来确定我就在她身边。”经过多方打听,胡婷婷在北京找到一家专业眼科医院,于2019年6月,开始带尚雪做针灸康复治疗,银针要扎在头、脸、腹部和手脚多处,小人儿几乎成了一个可怜的“小刺猬”。<\/P>

<\/P>

“我一个女人带着孩子能走到今天,离不开社会爱心人士的帮助,我们是不幸的同时也是幸运的。孩子爸爸在她移植后没多久就离开了,之后再也没出现过。在我最需要丈夫的时候他不在,从此以后也不再需要。”胡婷婷坚定的说到。这份伟大的母爱实在令人敬佩,“为母则刚”在她身上得到了最好的诠释。<\/P>

<\/P>

“到目前为止花费超过120万,现在连下个月的房租都拿不出,移植后一年评估结束后就得回家,因为没钱了只能暂时放弃眼睛康复治疗,可是最好的治疗时机是8岁之前。”胡婷婷忧心忡忡的说。眼睛是心灵的窗户,人们认知世界80%要靠眼睛,尚雪这么小就看不见这个世界对她来说是多么的残忍。胡婷婷母女俩走到今天太不容易了,眼看就要看见曙光了,如果因为钱中断治疗实在太可惜了。<\/P>

如果您希望尚雪能重见阳光,请点击【】进入腾讯公益帮助她。<\/P>","content":[{"count":1,"desc":null,"face":"528,161,373,266;","has180":"1","img":{"imgurl0":{"face_size":{"height":266,"width":373,"x":528,"y":161},"height":800,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_match\/0\/11158552089\/0","length":573,"width":1200},"imgurl1000":{"face_size":{"height":222,"width":311,"x":440,"y":134},"height":667,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_bt\/0\/11158552089\/1000","width":1000},"imgurl640":{"face_size":{"height":142,"width":199,"x":282,"y":86},"height":427,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_bt\/0\/11158552089\/640","width":640},"imgurl641":{"face_size":{"height":142,"width":199,"x":282,"y":86},"height":427,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_bt\/0\/11158552089\/641","width":641}},"img_url":"http:\/\/inews.gtimg.com\/newsapp_match\/0\/11158552089\/0","img_url_height":800,"img_url_width":1200,"img_url_wifi":"http:\/\/inews.gtimg.com\/newsapp_match\/0\/11158552089\/0","islong":0,"isqrcode":0,"itype":2,"type":"img_url"},{"desc":"“刮骨手术后,孩子推出手术室时已经清醒,痛哭崩溃一声声喊着妈妈我疼啊。我找主任沟通求他想想办法,当时疼痛评估10级,医生说已经开了吗啡止痛,但是必须术后4个小时才能用,孩子硬生生的扛了4个小时。我每次回想起来都难受到不行,好在现在都熬过来了。”胡婷婷皱着眉头痛苦的说道。","type":"cnt_article"},{"count":1,"desc":null,"face":"474,276,148,127;","has180":"1","img":{"imgurl0":{"face_size":{"height":127,"width":148,"x":474,"y":276},"height":800,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_match\/0\/11158552098\/0","length":635,"width":1200},"imgurl1000":{"face_size":{"height":106,"width":123,"x":395,"y":230},"height":667,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_bt\/0\/11158552098\/1000","width":1000},"imgurl640":{"face_size":{"height":68,"width":79,"x":253,"y":147},"height":427,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_bt\/0\/11158552098\/640","width":640},"imgurl641":{"face_size":{"height":68,"width":79,"x":253,"y":147},"height":427,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_bt\/0\/11158552098\/641","width":641}},"img_url":"http:\/\/inews.gtimg.com\/newsapp_match\/0\/11158552098\/0","img_url_height":800,"img_url_width":1200,"img_url_wifi":"http:\/\/inews.gtimg.com\/newsapp_match\/0\/11158552098\/0","islong":0,"isqrcode":0,"itype":2,"type":"img_url"},{"count":1,"desc":null,"face":"740,42,221,204;533,297,185,162;","has180":"1","img":{"imgurl0":{"face_size":{"height":417,"width":428,"x":533,"y":42},"height":800,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_match\/0\/11158552096\/0","length":475,"width":1200},"imgurl1000":{"face_size":{"height":348,"width":357,"x":444,"y":35},"height":667,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_bt\/0\/11158552096\/1000","width":1000},"imgurl640":{"face_size":{"height":223,"width":228,"x":284,"y":22},"height":427,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_bt\/0\/11158552096\/640","width":640},"imgurl641":{"face_size":{"height":223,"width":229,"x":285,"y":22},"height":427,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_bt\/0\/11158552096\/641","width":641}},"img_url":"http:\/\/inews.gtimg.com\/newsapp_match\/0\/11158552096\/0","img_url_height":800,"img_url_width":1200,"img_url_wifi":"http:\/\/inews.gtimg.com\/newsapp_match\/0\/11158552096\/0","islong":0,"isqrcode":0,"itype":2,"type":"img_url"},{"desc":"但是尚雪目前最大的问题是眼睛几近失明,是原发病导致的视神经萎缩。移植4个月后,胡婷婷发现尚雪的视力一点也没有好转,找东西或递给她东西时全靠摸。当胡婷婷知道孩子看不见后,恨不得时时刻刻守护在她身边。“最心痛的是我就在她对面,她却看不见我,不时要喊一句‘妈妈呢?’来确定我就在她身边。”经过多方打听,胡婷婷在北京找到一家专业眼科医院,于2019年6月,开始带尚雪做针灸康复治疗,银针要扎在头、脸、腹部和手脚多处,小人儿几乎成了一个可怜的“小刺猬”。","type":"cnt_article"},{"count":1,"desc":null,"face":"501,251,289,239;","has180":"1","img":{"imgurl0":{"face_size":{"height":239,"width":289,"x":501,"y":251},"height":800,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_match\/0\/11158552621\/0","length":549,"width":1199},"imgurl1000":{"face_size":{"height":199,"width":241,"x":418,"y":209},"height":667,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_bt\/0\/11158552621\/1000","width":1000},"imgurl640":{"face_size":{"height":128,"width":154,"x":267,"y":134},"height":427,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_bt\/0\/11158552621\/640","width":640},"imgurl641":{"face_size":{"height":128,"width":155,"x":268,"y":134},"height":428,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_bt\/0\/11158552621\/641","width":641}},"img_url":"http:\/\/inews.gtimg.com\/newsapp_match\/0\/11158552621\/0","img_url_height":800,"img_url_width":1199,"img_url_wifi":"http:\/\/inews.gtimg.com\/newsapp_match\/0\/11158552621\/0","islong":0,"isqrcode":0,"itype":2,"type":"img_url"},{"count":1,"desc":"2018年7月,为给尚雪筹集移植费用,母女俩在北京街头乞讨。","face":"712,235,130,94;","has180":"1","img":{"imgurl0":{"face_size":{"height":94,"width":130,"x":712,"y":235},"height":800,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_match\/0\/11158552086\/0","length":765,"width":1200},"imgurl1000":{"face_size":{"height":78,"width":108,"x":593,"y":196},"height":667,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_bt\/0\/11158552086\/1000","width":1000},"imgurl640":{"face_size":{"height":50,"width":69,"x":380,"y":125},"height":427,"imgurl":"http:\/\/inews.gtimg.com\/newsapp_bt\/0\/11158552086\/640","width":640},"imgurl641":{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北京图片,移植图片,离婚图片,单亲妈妈
北京图片,移植图片,离婚图片,单亲妈妈
北京图片,移植图片,离婚图片,单亲妈妈
北京图片,移植图片,离婚图片,单亲妈妈
北京图片,移植图片,离婚图片,单亲妈妈
北京图片,移植图片,离婚图片,单亲妈妈
北京图片,移植图片,离婚图片,单亲妈妈
北京图片,移植图片,离婚图片,单亲妈妈
北京图片,移植图片,离婚图片,单亲妈妈
北京图片,移植图片,离婚图片,单亲妈妈
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