{"version":1,"type":"rich","provider_name":"Libsyn","provider_url":"https:\/\/www.libsyn.com","height":90,"width":600,"title":"Kourtney Loses Her Sister To Rett Syndrome","description":"From being born into a family with Kristi already navigating the challenges of Rett syndrome, Kourtney\u2019s story is one of dedication, loss, and profound love. Kristi was born in 1965 with a rare neurological disorder that affects primarily girls, which led her to lose many of her early developmental skills between 6 and 18 months old. The disorder wasn\u2019t formally diagnosed in the United States until 1986, so for the first 21 years of Kristi\u2019s life, the family had no name for what she was living with. Kourtney, the youngest of five, was seven years behind her siblings and grew up with Kristi already in a group home. Kourtney\u2019s relationship with Kristi went beyond that of a typical sibling dynamic. She served as her sister, caregiver, and advocate, navigating the complexities of Kristi\u2019s condition and her family\u2019s evolving needs. Despite the challenges, Kourtney\u2019s memories are filled with light moments and profound connections, like when Kristi laughed at a joke no one thought she would understand, signaling that \u201cshe\u2019s in there,\u201d a realization that challenged every assumption they\u2019d been told about her mental capabilities. The family finally received a formal diagnosis of Rett syndrome when Kristi was 21, after a neurologist encountered a presentation by Dr. Andreas Rett, the doctor who discovered the syndrome. This brought a mixture of relief and frustration, as it came too late to change the course of Kristi\u2019s treatment, but finally gave the family a name for what they had been living with for so many years. Kourtney became heavily involved in the Rett community, both as an advocate and later as a professional, dedicating her life to helping other families and teaching children with Rett syndrome how to communicate through eye gaze technology. In this episode, Kourtney shares her journey through anticipatory grief, the lifelong process of caring for a sibling with Rett syndrome, and the unique pain of losing not just a sister, but the person who shaped her identity. She reflects on how her life and career have been deeply intertwined with Kristi\u2019s presence, leading her to work in the Rett community as an advocate and teacher. Kourtney\u2019s story is a testament to the enduring bonds of sibling love, the complexities of grief, and the resilience it takes to rebuild a life after such a significant loss. In this episode: (00:00:55) \u2013 Introduction to Kourtney\u2019s Family Dynamic and Kristi\u2019s Early Years (00:10:09) \u2013 Understanding Rett Syndrome and the Impact on the Family (00:18:34) \u2013 The Evolution of Kourtney\u2019s Role from Sister to Caregiver (00:36:42) \u2013 Kristi\u2019s Communication Breakthrough with Eye Gaze Technology (00:46:39) \u2013 The Final Years: Health Declines and the Emotional Toll (00:51:41) \u2013 Grieving Kristi\u2019s Passing and Finding Purpose in Advocacy This Episode is Sponsored by The Surviving Siblings.  Connect with Kourtney: TikTok: https:\/\/www.tiktok.com\/@kbjourney75 Instagram: https:\/\/www.instagram.com\/kourtney0715\/ Facebook: https:\/\/www.facebook.com\/kourtney.barnum   Connect with Maya: Podcast Instagram: @survivingsiblingpodcast Maya's Instagram: @mayaroffler TikTok: https:\/\/www.tiktok.com\/@survivingsiblingspodcast Twitter: @survivingsibpod Website: Thesurvivingsiblings.com Facebook Group: The Surviving Siblings Podcast YouTube: The Surviving Siblings Podcast Patreon: https:\/\/www.patreon.com\/TheSurvivingSiblingsPodcast ","author_name":"The Surviving Siblings\u00ae","author_url":"https:\/\/www.thesurvivingsiblings.com","html":"