Ruthie Weiss was born with white hair, but her parents did not consider the possibility of there being more to the story until they noticed that she was not visually tracking when she was just a month old. Thus began a long and continuing story of the discovery of Ruthie's albinism, her significant visual impairment, but also her courage and determination to do anything and everything her peers do, if not more. But this story is really about how her parents grew to embrace the impact Ruthie (and importantly Ruthie's disability) had on their lives and the lives of everyone with whom Ruthie interacted. The experience of raising Ruthie ultimately led her parents to think about a world where she might not exist, or at least might not exist with albinism. But it also led them to ponder a future in which children with genetic differences like albinism are gene edited using technologies like CRISPR-Cas9.

中文翻译：

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比利偶像

Ruthie Weiss 天生白发，但她的父母并没有考虑这个故事是否有更多内容，直到他们注意到她在一个月大时没有进行视觉跟踪。就这样开始了一个漫长而持续的故事，她发现了露西的白化病、她的严重视力障碍，以及她做任何事情的勇气和决心，以及她的同龄人所做的一切，如果不是更多的话。但这个故事实际上是关于她的父母如何逐渐接受 Ruthie（尤其是 Ruthie 的残疾）对他们的生活以及与 Ruthie 交往的每个人的生活的影响。抚养露丝的经历最终让她的父母想到了一个她可能不存在的世界，或者至少可能不存在白化病。