Living in a Body that's Melting (A Rare Connective Tissue Disorder)

Kayley is diagnosed with a rare connective tissue disorder known as Loeys-Dietz syndrome. This impacts every part of her body including the internal organs. People with Loeys-Dietz have a life expectancy of around 37 years old, and Kayley is a young adult in college. She has learned that it is okay to grieve a potentially shortened life, but Kayley is also dedicated to making the most of however many years she has on this earth.

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Видео Living in a Body that's Melting (A Rare Connective Tissue Disorder) канала Special Books by Special Kids