Perspectives in Biology and Medicine

abstract:

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.