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          鸿运国际登陆网站

          2018-08-16 12:18:22 来源:百度宝宝知道

          鸿运国际登陆网站__官方网站:【www.yuheting.com】客服微信:wwwyuhein【热线:131-1416-4334】柬埔寨今大选美媒批洪森:倒向西方战略对手中国



            原标题:一家3代患企鹅病一个个倒下 村民却怀疑是传染病

            

            原标题:一家三代同患“企鹅病”一个接一个倒下 61岁奶奶:我活一天,就要守他们一天

          △医护人员来到黄家

            7月26日,贵州、瓮慢村。

            几名身穿白大褂医生的到来,让这个距离重庆主城550公里的平静山村多了一丝生机。

            在瓮慢村黄家,6年时间里,3个精壮的男人接连“倒下”,消息像“传染病”一样很快蔓延整个村庄,没有人再愿意踏进黄家院子半步。但37岁的黄文桥心里明白:这不是传染病!就像生活被老天爷装上了“慢镜头”,每一个动作都不由自已。

            从开始的步履不稳,到后来的行动失调,逐渐无法站立,只能依靠轮椅甚至卧床不起……最残酷的是,整个过程,他心知肚明,却反抗无力!

            没有人知道,下一个被砸中的会是谁?它就像一个残酷掠夺者,今天夺走这个,明天夺走那个,到最后一点不留。而谁也无力把控,生命留给他们,到底还有多少时间……

          △医护人员帮黄文武做检查

            瓮慢村位于贵州省铜仁市碧江区六龙山侗族土家族乡,距离重庆主城550多公里,开车要近10个小时。7月26日,医生们的到来,打破了村庄的宁静。然而,黄家人的眼神里却流露出恐惧!

            6岁的天天认识医生护士们,他躲在大门后,悄悄睨视着周围发生的一切,在此前的检查中,天天条件反射似的抗拒所有检查。

            远处,黄文桥、黄文武兄弟分坐在院子两头,一言不发,蹲坐在地上的二叔黄文武,用竹竿支撑起身体,艰难站立起来,如今,他是黄家第二代人中,唯一还能站起来的一个。

            兄弟两相互对望一眼,然后,从喉咙里用力挤出几个含混不清的字。

            “医生,治治这病!”61岁的奶奶李金翠同样的少言寡语,但神态坚定而倔强。一家三代患病的打击,早已在她的脸颊上刻下深深的痕迹,她亲眼目睹丈夫、两个儿子、孙子患病。

            “一开始,都是摔了跤,就摔成了现在的样子!”李金翠埋怨,一家人都是一样的毛病,病情的发展,让原本简单的说话,成为很费力的一件事情。在这个家里,无法交流。而站立,更是一件奢侈的事情。

          △李金翠

            李金翠没啥文化,在家务农一辈子。但她记得很清楚,丈夫黄绍富是49岁时发病,但到了大儿子黄文桥,是26岁;小儿子黄文武,是29岁;小孙子发病时,仅仅5岁。

            “一开始,都是一样的病。”李金翠说,就是走路摇摇晃晃,走不直,不敢下台阶,走着走着就摔跤了……到后来,端不住碗了,饭撒得到处都是,李金翠把家里的筷子换成勺子,把陶瓷碗换成不锈钢碗,“指不定, 又把碗摔了!”

            去年,刚刚5岁的小孙子开始走路摇晃,李金翠抱住天天连问了好几遍:“你脚是啷个了?”婆孙俩悄悄大哭一场。 

            而唯一的希望是,大孙子明明(化名)今年11岁,还好好的。

            李金翠想,无论如何,这病都得治!最起码,要给黄家保住一个孙子!但2006年,黄绍富最先发病时,他们从村上、看到镇上,就连街坊介绍的最有名的医生也没看出来得了什么病。后来经人介绍,李金翠的亲戚找到了神经外科专家沈光建博士,他也是贵州人,在重庆工作。

            家里老的老、病的病,李金翠决定,带着6岁的小孙子上重庆治病。临行前,37岁的大儿子黄文桥再三交代:“要查出个原因来!”

            

          △6岁的天天躲在门后看着大家

            重医附三院神经疾病中心主任医师沈光建博士介绍,今年4月,刚刚收治天天时,他们最初是按“共济失调”收进来的。但询问病史发现,除了天天,家里爷爷、爸爸、二叔都有类似的病症。

            李金翠一直认为:“都是因为摔一跤,慢慢就走不得路了!”

            沈光建博士介绍,患者初期像一只行走不稳的企鹅一样,摇摇摆摆;到了中期,行为不受控制,全身不经意颤动,语言模糊不清;一般9至10年后病入膏肓,全身衰竭,最后逐渐失去意识。

            而最可怕的是,发生这一切,都是在人意识清醒的情况下逐渐发生的,人却无力反抗,身体各项机能也会以远快于常人的速度衰竭。目前,尚无治愈的可能,只能用一些药物改善症状,缓解病情。

            “我们可以做的,就是不再让悲剧蔓延!”沈光建博士说,他无意间听李金翠说起,说他们家是一个大家族,还要再生!

            为了查明病因,7月26日,重医附三院派出两名医生、一名护士的3人医疗小组,驱车10个多小时专程赶到天天家里,在当地政府的支持下,为黄家全部5人做了抽血采样,病送往上海进行基因检测。

          △医护人员帮大孙子明明做检查

            基因检测的结果,将在两个月后揭晓。

            61岁的李金翠终于可以斩钉截铁地告诉宣告,他家不是传染病,但结果,或许更让人绝望。

            沈光建博士介绍,由于“企鹅病”属于常染色体显性遗传病,也就是说,只要父母一方患病,经基因确诊后,那么生育的后代中将有50%的几率会遗传到这种疾病。

            若后代不幸患病,那么他的后代也将有50%的几率遗传该疾病。当然,如果生育的后代是健康的,理论上,孩子长大后不会再遇到这个问题,生育也跟普通人一样。

            也就是说,目前尚未发病的明明,携带或不携带遗传性基因的几率都是50% 。

            “如果携带,那么他结婚生子前,就应提前到医院进行相关检测和评估,提早介入进行干预,避免悲剧再次上演;如果不携带,那么,理论上,他就可以正常的结婚生子,和普通人一样。”沈光建博士说。

            “唯一的希望就是我们黄家,能留下个正常的孩子!”李金翠有时也会抱怨,“10万人才有一例,为什么全被我们家抽中了?”

            但生活还得继续!李金翠养了一头猪,种了家门口几分地,稍有空闲的时候,也要到附近打点零工,补贴一大家子生活的开销。

            也有人问李金翠,“要是你走了,这一大家子啷个办哦?”李金翠想,“我活一天,就要守他们一天!”就盼身体争气,能多活几年!就盼着11岁的明明能好好的!她不在家的时候,重担就落到孩子的身上。

            回忆过去12年,李金翠不怕累,她可以挨个给三个男人喂饭,抬着轮椅帮他们洗澡、上厕所……

            怕就怕,病情发展太快。2012年,小儿子黄文武刚犯病得时候,还跟正常人无异,但几年下来,也已经是“半瘫痪”了,只能偶尔走上两三步,但如果没有人扶,就会一头栽到地上;想把饭喂进嘴里,手上有力气,但就是控制不住,试好几次才能塞得进去……

            “但愿,能等到能治得那一天……”李金翠说。 

          责任编辑:桂强

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