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男生带奶奶和10岁妹妹上大学 亲人都因罕见病去世

2017-09-14 05:11:20   中国青年网

9月7日开学的这天,甘南县的孙晓宇带着65岁的奶奶和10岁的妹妹,全家三口人一起来报到。

他的家里,就只剩下奶奶和姑姑家的妹妹了......

  孙晓宇:我奶是我生命的全部。

  记者:有没有想过奶奶有一天会离开?

  孙晓宇:想过,但尽量延长几年吧。

  记者:要是说让你画一幅人像画,你是会画姥姥还是哥哥?

  孙晓宇的妹妹:他俩一起画,把纸横过来,左边一个人,右边一个人。

  记者:在你心里都很重要是吗?

  孙晓宇的妹妹:嗯。

家人因罕见病相继去世

家里只剩奶奶和妹妹

这个胖乎乎的男孩叫孙晓宇,站在军训的队伍里,其实除了胖,没什么特别的。可9月7日开学的那一天,孙晓宇是引人注目的,他带着65岁的奶奶、10岁的妹妹,全家三口人一起来报到。

“上有老,下有小”一般说的都是中年人,可对于刚刚年满18岁的孙晓宇,就是这个现状,亲属里只剩奶奶和姑姑家的妹妹了。提到奶奶,本不爱说话的孙晓宇,显得更加沉默。印象中的奶奶总有收拾不完的屋子,做不完的饭,每天在狭窄的屋子里来回穿梭。而晓宇也特别懂事,从小就帮奶奶华显珍分担家务。

2004年,孙晓宇只有五岁,对生死病痛还懵懵懂懂,就在那一年,晓宇的爸爸突然患上了一种怪病。当时,这已经是家族里第五例类似的病例了!在这之前,华显珍的公公、丈夫、丈夫的妹妹、大儿子都患过类似的病,并因此失去了性命。之后,华显珍的二儿子、大孙子、女儿也相继患上这种病。

家族遗传亨廷顿舞蹈症

老人签订遗体捐献书

2012年,为了找到亲人们相继离世的原因,华显珍的女儿做了一个详细的检查,医生诊断,这是一种叫亨廷顿舞蹈症的罕见疾病,亨廷顿舞蹈症是一种常染色体显性遗传性神经退行性疾病,临床上发病表现为痴呆和舞蹈样的动作,随着病情进展逐渐丧失说话、行动、思考和吞咽的能力,病情大约会持续发展10年到20年,并最终导致患者死亡。目前尚无阻止或延迟亨廷顿病发展的方法。

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