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

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

FromThe Rare Life


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

FromThe Rare Life

ratings:
Length:
36 minutes
Released:
Apr 14, 2022
Format:
Podcast episode

Description

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.
Released:
Apr 14, 2022
Format:
Podcast episode

Titles in the series (100)

This is the real, raw, and all the feels of loving a child with disabilities. Episodes feature parent-guests, professionals, and solo episodes with host Madeline Cheney. Their authentic conversations don’t shy away from the strong and mixed emotions that often accompany medically-complex parenting. Parents listen in to feel seen, validated, and receive much-needed solidarity. Professionals working with disabled people listen in to better understand what is often going on under the surface for a family living with disabilities.