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
⏱️ TIMESTAMPS
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