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In this blog, I pull from my experiences raising a toddler with a rare genetic disorder. The posts explore a wide range of topics and focus on the emotional struggles we go through when parenting a child who has differences or disabilities. There are no easy answers or judgments here. Just honesty, understanding, and a sense we are not alone.

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ABOUT CLAIRE

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I hold a doctorate from Yale and worked as an academic before I left the workforce to care for my youngest daughter. I have degrees in French and German and have lived in both France and Germany. I love to read, write, run, and hunt for treasures in thrift stores.

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I am the mother of two girls: a neurotypical grade schooler and a toddler with a chromosomal microdeletion, as well as a rare genetic disorder called Rett Syndrome. This is a progressive disease that affects mostly females and manifests in toddlerhood. It normally involves loss of speech and purposeful hand use, as well as mobility difficulties, breathing issues, seizures, and anxiety. In early 2020, when my youngest daughter was two, she was misdiagnosed with autism (quite common for Rett Syndrome). In August 2021, at the age of three-and-a-half, she got a correct diagnosis.

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I am open about my struggles as a parent but also want to maintain my family’s privacy. For this reason, I don’t include my daughters’ full names in my blog. 

HIGHLIGHTS

Image by Omar Lopez

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