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美9岁女童患罕见巨脑症 或将以其名字命名该疾病

2017-09-04 07:56:05   中国青年网

【环球网综合报道】据英国《每日邮报》8月31日报道,美国佛罗里达州的9岁女童凯蒂(Katie Renfroe)患上罕见巨脑症,只能通过管道进食。经过数次手术后,医生仍然无法确切诊断其病情。

据悉,凯蒂9个月大时就进行过脑部手术,现在仍然无法行走和说话,还患有癫痫。最初,医学专家将其病情诊断为生长障碍巨脑症导致的大脑过度生长,后来,专家向凯蒂的母亲安吉(Angie)表示,病情难以确诊,或将以凯蒂的名字来命名该疾病。

安吉告诉记者:“凯蒂的情况非常罕见——医生还在努力确诊其病情。我怀孕六个月时就得知凯蒂出生后会患上巨脑症,但没想到她的脸部也会变成这样。之前的手术已经从她脸部取出了类似脂肪组织的东西。目前就我所知,还没有人知道凯蒂究竟得了什么病。医生以前说是侏儒症,还有其它很多我连名字都说不上来的疾病——但是她身上后来又出现了许多其它症状。”

凯蒂现在就读于一所残疾儿童学校——在老师的帮助下,她学会了使用电脑,还能与班上同学交流互动。在家中,她有七个兄弟姐妹,家里人对她都十分关爱呵护。凯蒂18岁的姐姐梅甘(Mega Renfroe)表示:“凯蒂的性格特别好——她很开朗豁达,笑声十分动听。”凯蒂的母亲还告诉记者:“凯蒂生活得很快乐。别的小孩子喜欢干的事,她基本上也能做。她有正常人的情绪——受到了伤害,就会大哭;碰上有趣的事情,她也会开怀大笑。”

谈及凯蒂难以预测诊断的病情时,她表示:“我希望能够尽我们最大的努力让凯蒂过得开心、满足。我们虽然经历了世界上最糟糕的事情,但只要凯蒂过得开心,对我们来说就足够了。”

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