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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 disorder
Keyundra 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 unfolded
The daily impact of neutropenia and feeding difficulties
What TNRC6B gene mutations mean for development and behavior
How storytelling helps families cope and connect
Why 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.org
🌐 TNRC6B info: https://rarediseases.info.nih.gov
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💙 Mental Health Resources
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