Real Talk: The Survivor Podcast

Raising a Child with TBR1: Navigating a Rare Genetic DisorderWhen Michelle Choairy’s son was diagnosed with TBR1 — a rare genetic disorder affecting only 200 people worldwide — her life changed forever.In this powerful episode of Wheel With It, Michelle shares what it’s really like raising a child with intellectual and developmental disabilities, navigating isolation as a parent, fighting for early intervention, and becoming an advocate for families in the special education system.We discuss:What TBR1 is and how rare genetic disorders are diagnosedEarly intervention and childhood apraxia of speechHow to navigate IEPs and special educationMedicaid waivers & state-funded programsInsurance battles parents don’t talk aboutThe emotional isolation of parenting a child with disabilitiesMichelle’s “THRIVE” framework for parentsIf you’re a parent of a child with special needs, an advocate, or someone navigating developmental delays, this episode will give you clarity, hope, and practical tools.