Raising Ivy: Life with Trisomy 9 Mosaic | Talking Trisomy

In this episode of Talking Trisomy, Nick Holladay sits down with Renee Case from northern Indiana, a mom who adopted two medically complex children and has become a fierce advocate for families navigating rare chromosome disorders. Renee shares the full story of her daughter Ivy, who has Trisomy 9 Mosaic (T9M), a rare condition in which only some cells carry the extra chromosome 9. From an unexpected adoption in San Antonio to spinal surgeries in Minnesota, Renee walks us through what daily life looks like, how Ivy communicates using eye gaze technology, and why she stopped putting limits on what her daughter can achieve. This conversation covers: What Trisomy 9 Mosaic is and how it differs from full Trisomy 9 and Trisomy 9P The adoption journey and early NICU days Total care parenting and adapting to your child's needs Spinal surgery, kidney stones, and respiratory illness DNRs, palliative care, and end of life planning for medically complex children Eye gaze communication devices and what progress really looks like Advocacy at the state level for Indiana's medically complex community How to be a beacon for other families just entering the journey Ivy loves Beauty and the Beast, pickles, and hanging out wherever the action is. She is strong, she is happy, and she is proof that these kids teach us more than we ever expected. Resources mentioned: Trisomy 9 New and Expectant Parent Book: https://trisomy.org SOFT membership and support: https://trisomy.org SOFT Annual Conference: https://trisomy.org/conference-2/ Subscribe for more Talking Trisomy episodes featuring families, clinicians, and advocates from across the trisomy community. 🎙 Available on Spotify, YouTube, and at http://trisomy.org #Trisomy9 #Trisomy9Mosaic #RareChromosomeDisorders #TalkingTrisomy #SOFT #TrisomyAwareness #MedicallyComplexKids #EyeGazeTechnology #AdoptionStory #RareDisease