Raising a Child with TBR1: Navigating a Rare Genetic Disorder

When 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 diagnosed
Early intervention and childhood apraxia of speech
How to navigate IEPs and special education
Medicaid waivers & state-funded programs
Insurance battles parents don’t talk about
The emotional isolation of parenting a child with disabilities
Michelle’s “THRIVE” framework for parents

If 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.

🎧 Listen now and learn how to thrive — even when the journey feels overwhelming.

00:00 – Meet Michelle & Introduction to TBR1

02:00 – What Is TBR1? (Rare Genetic Disorder Explained)

03:40 – Is TBR1 Fatal?

04:30 – Why Diagnosis Is Increasing

05:50 – Early Intervention & Speech Delays

07:00 – The Isolation of Parenting a Child with Disabilities

08:30 – Michelle’s Advocacy Journey Begins

11:00 – Childhood Apraxia of Speech & Traveling for Treatment

13:00 – The THRIVE Framework Explained

13:15 – T: Building the Right Medical Team

14:45 – H: Help Systems (IEPs, Insurance, State Programs)

16:00 – R: Relationships & Explaining Disabilities to Family

16:45 – I: Taking Care of Yourself as a Parent

17:15 – V: Celebrating Small Wins

17:45 – E: Expect a Miracle

18:30 – Special Education Concierge Program

21:00 – Medicaid Waivers Explained

24:00 – Respite Care & State Support

25:00 – Free IEP Review Offer

26:00 – Closing Thoughts

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