The Rare Life

86: Karley’s Story | Two Rare Syndromes, Playing the What-If Game, and Appointments on The Daily


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With more than 20 therapists and doctors for her two daughters, Karley spends almost every day at appointments with her two daughters. Her three-year-old Nora has two rare syndromes which come along with many sub-diagnoses including hydrocephalus.

In this episode, Karley shares what it was like to receive a prenatal diagnosis and to play the waiting game until birth. She also shares the incredible experience of seeing her baby smile and open her eyes for the first time after a life-saving shunt was placed. We also dig into the dynamics of almost-daily appointments for her family.

Links:

Follow Karley on Instagram.

Follow me on Instagram.

Check out photos of Karley + fam on the website.

Check out our appointment day merch.

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The Rare LifeBy Madeline Cheney

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