EPISODE · Jul 20, 2025 · 59 MIN
TNRC6B With Keyundra From Arkansas
from Rare Connection · host Joanna
Send us Fan MailIn this powerful episode of Rare Connection, host Joanna Ball sits down with special needs mom and author Keyundra, who shares the emotional and medical journey of her son Zaire — a child living with multiple rare conditions, including:🫁 Laryngomalacia – a rare airway disorder🦠 Neutropenia – a rare immune disorder🧬 TNRC6B gene mutation syndrome – linked to autism, ADHD, global developmental delays, feeding challenges, and behavioral conditions like OCD, ODD, and bipolar disorderKeyundra is the author of the children’s book Zaire’s Big Feeling About Feeding, which helps children and families talk about the emotional side of medical feeding challenges. In this interview, she opens up about parenting through uncertainty, advocating for her son’s needs, and writing her way through grief and growth.👉 What You’ll Hear In This Episode:How Zaire’s rare diagnoses unfoldedThe daily impact of neutropenia and feeding difficultiesWhat TNRC6B gene mutations mean for development and behaviorHow storytelling helps families cope and connectWhy World Airways Day (July 10) matters to this conversation🔗 Resources Mentioned in This Episode:📘 Zaire’s Big Feeling About Feeding – https://www.amazon.com/Zaires-Big-Fee...🌐 Learn more about laryngomalacia: https://copingwithlm.org🌐 Neutropenia support: https://neutropenianet.or🌐 TNRC6B info: https://rarediseases.info.nih.go👍 Like this video📲 Subscribe to my channel Rare Chef for more episodes, cooking videos, and rare disease stories💬 Drop a comment to share your thoughts or support for Keyundra and Zaire📩 Prefer to listen? Audio show available on all major podcast platforms📱 Text me your thoughts or questions through the link in the show notes!💙 Mental Health ResourcesIf you or someone you know is struggling, the 988 Suicide & Crisis Lifeline is here for you.📞 Call or Text 988 | 💻 Chat at Chapter markers00:00 Intro01:33 Introducing Keyundra04:46 Zaire is born premature06:56 Misdiagnosis Newborn Tachy Apnea 07:44 Zaire is diagnosed with Laryngomalacia08:25 Zaire's first surgery09:23 SupraglottiscopeSupport the show
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Send us Fan Mail In this powerful episode of Rare Connection, host Joanna Ball sits down with special needs mom and author Keyundra, who shares the emotional and medical journey of her son Zaire — a child living with multiple rare conditions, including: 🫁 Laryngomalacia – a rare airway disorder 🦠 Neutropenia – a rare immune disorder 🧬 TNRC6B gene mutation syndrome – linked to autism, ADHD, global developmental delays, feeding challenges, and behavioral conditions like OCD, ODD, and bipolar d...
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TNRC6B With Keyundra From Arkansas
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