Stephanie Gives Winckler Discusses Rett Syndrome and Honoring her Daughter's Life

Courageous Wellness

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On today’s episode we have an inspiring and moving conversation with Stephanie Gives-Winckler, author, illustrator, and Rett Syndrome Awareness educator and advocate. Stephanie shares her journey of raising and losing her daughter, Tiffanie Nina Simone Hayes, due to complications with Rett Syndrome in 2011. She shares how mental health plays a part in raising a child born with a rare neurological disorder, and shares her hope-filled story with us today.

Stephanie is also the author of “The Best Girlfriends Ever,” inspired by Tiffanie’s own journey with Rett Syndrome. Stephanie wrote the book as a way to fill a void from Tiffanie’s passing and bring awareness to Rett Syndrome -- The plot of the book involves Tiffanie’s real life friends, accompanying Tiffanie on a summer adventure.

Rett Syndrome (RS) is a debilitating neurological disorder that predominantly affects females. It is the leading genetic cause of severe impairment in girls, brought on by a single gene mutation that leads to underproduction of an important brain protein. October is also Rett Syndrome Month. We are grateful to Stephanie for her courage and spirit. Enjoy the episode.

If you want to learn more about Stephanie, Rett Syndrome, and purchase "The Best Girlfriends Ever," you can visit: http://www.tiffanieishope.org

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