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Kourtney Loses Her Sister To Rett Syndrome

Release Date: 10/16/2024

The Surviving Siblings®

On Episode 6 of Season 9 of The Surviving Siblings Podcast®, host Maya Roffler is joined by Teri Gosselin, a surviving sibling, speaker, and grief advocate, who shares the story of losing her brother Joey to complications related to Marfan Syndrome—and how that loss forever intertwined grief, love, family, and purpose in her life. Teri takes us back to her childhood growing up just outside of Washington, DC, where she was the oldest of three. From the moment Joey was born, she stepped into the role of protector, advocate, and “sissy”—completely devoted to her little brother. Their...

Heather Loses Garrett To Accidental Overdose

The Surviving Siblings®

On Episode 5 of Season 9 of The Surviving Siblings Podcast®, host Maya Roffler is joined by Dr. Heather Taylor, a surviving sibling, therapist, and grief advocate, who shares the story of losing her brother, Garrett, to an accidental overdose, and how that loss completely reshaped her life, her career, and her mission in the grief space. Heather takes us back to her childhood growing up in a small town in Washington State, where she and her younger brother Garrett were raised surrounded by nature, imagination, and a deep sibling bond. They were each other’s constant—playing outside,...

Erica Loses TJ To A Car Accident

The Surviving Siblings®

On Episode 4 of Season 9 of The Surviving Siblings Podcast®, host Maya Roffler is joined by Erica Bohn, a surviving sibling who shares the story of losing her brother, TJ, in a car accident over 30 years ago, and how that loss shaped her life, her healing, and ultimately her path into helping others. Erica takes us back to her childhood growing up in a close-knit Midwestern family. Both she and her brother TJ were adopted as babies, raised in what she describes as a loving, “perfect” family, until one summer night in 1995 changed everything. TJ, just weeks away from starting his senior...

Gyani Loses Pete To Cancer

The Surviving Siblings®

On Episode 3 of Season 9 of The Surviving Siblings Podcast®, host Maya Roffler is joined by Gyani, a surviving sibling and grief professional, who shares the story of losing his brother, Pete, to cancer, and how earlier loss in his life shaped the path he walks today. Gyani takes us back to his first encounter with grief at 13, when his father died of cancer. Raised in what he describes as a “Leave It to Beaver” style family. Mom, dad, and five boys—he reflects on how grief rippled through their family system like a bomb, in a time when there were few tools or conversations available to...

Earla Loses Leigh-Ann To Pancreatic Cancer

The Surviving Siblings®

On Season 9, Episode 2 of The Surviving Siblings Podcast®, host Maya Roffler is joined by Earla Dawn, who shares the story of losing her sister, Leigh-Ann, to pancreatic cancer. Earla takes us back to their childhood on the prairies, four siblings, endless fun, and the kind of relationship that started with “fighting like cats and dogs”… and grew into a deep, lifelong bond. Leigh-Ann was the polished one, the “always put together” sister, a devoted mom, a dog lover, and a woman who reinvented her life, starting over after divorce, and eventually moving across the world to Spain in...

Stephen Loses Stacy To A Car Accident

The Surviving Siblings®

On episode 1 of Season 9 of The Surviving Siblings Podcast® host, Maya Roffler is joined by Stephen Stott who opens up about the tragic loss of his sister, Stacy, to a car accident 24 years ago. Stephen was just 16 when his life changed forever. After being "voluntold" to accompany his sister to a cheerleading camp six hours away, he shared a moment of deep personal truth with her the first person he ever came out to as queer. Just days later, on the drive home, they both fell asleep behind the wheel. Stacy didn’t survive. Stephen did. What follows is a deeply moving story of grief,...

Chelsey McHale Interviews Maya Roffler On Sibling Loss

The Surviving Siblings®

On episode 10 of season 8 of The Surviving Siblings® Podcast, guest host Chelsey McHale takes over the mic to interview podcast founder and host Maya Roffler in a deeply personal and reflective conversation. With 2026 marking 10 years since the loss of her brother Andreas, Maya opens up about what this milestone means to her, how her grief has evolved, and the legacy her brother continues to leave behind through this powerful community. From the early days of navigating violent loss to founding the podcast, the summit, and a thriving support network, Maya shares what she’s learned from...

Katherine Loses Colin To Cancer

The Surviving Siblings®

On episode 9 of Season 8 of The Surviving Siblings Podcast®, host, Maya Roffler sits down with Katherine Mandzak, a writer and advocate, as she opens up about losing her beloved younger brother Colin to a rare and aggressive form of bile duct cancer. From growing up as inseparable homeschool siblings to navigating a shocking cancer diagnosis, Katherine shares the raw reality of becoming the only surviving sibling and how her identity, grief, and life path were forever changed. She walks us through the six-month rollercoaster from diagnosis to hospice, the sacred final moments, and the...

Dan Loses Patti To Appendicitis

The Surviving Siblings®

On episode 8 of Season 8 of The Surviving Siblings Podcast®, host, Maya Roffler speaks with Dan Dunsmore, a devoted brother, father, and educator who shares the heartbreaking story of losing his sister Patti at just 13 years old to a sudden and misdiagnosed case of appendicitis. Dan takes us back to 1968 in South Knoxville, Tennessee, and walks us through the idyllic beginnings of his childhood, followed by a series of devastating family losses, each one reshaping the course of his life. Dan opens up about the traumatic last words he spoke to Patti, the moment he found himself alone in a...

Dawn Loses Justin To Suicide

The Surviving Siblings®

On episode 7 of Season 8 of The Surviving Siblings Podcast®, host, Maya Roffler sits down with Dawn, a surviving sibling who opens up about the unexpected loss of her brother Justin, just weeks before his wedding day. Dawn shares the full arc of their sibling bond, from pranks and family laughter, to the hidden pain Justin carried, to the shock of losing him to suicide in 2013. Through her storytelling, Dawn brings light to the complexities of grief, sibling guilt, the impact of hidden addiction and gambling, and the long road toward healing. This conversation is a tribute to Justin, a...

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From being born into a family with Kristi already navigating the challenges of Rett syndrome, Kourtney’s 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’t formally diagnosed in the United States until 1986, so for the first 21 years of Kristi’s 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’s relationship with Kristi went beyond that of a typical sibling dynamic. She served as her sister, caregiver, and advocate, navigating the complexities of Kristi’s condition and her family’s evolving needs. Despite the challenges, Kourtney’s memories are filled with light moments and profound connections, like when Kristi laughed at a joke no one thought she would understand, signaling that “she’s in there,” a realization that challenged every assumption they’d 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’s 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’s presence, leading her to work in the Rett community as an advocate and teacher. Kourtney’s 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.