S2 | E2 - Zara and IVA

S2 | E2 - Zara and IVA

From Teachable the Podcast by Curtis Huysamen

April 1, 2026 · 1h 40m · Season 2 · Episode 2

About this episode

Curtis and his wife share their personal journey of parenting their daughter Zara, who has Isovaleric Acidemia, discussing the challenges and insights gained along the way.

In this deeply personal episode, my wife and I share the story of our daughter, Zara, who was diagnosed with a rare metabolic condition called Isovaleric Acidemia (IVA). From the moment of diagnosis to navigating daily life, we open up about what IVA really means — not just medically, but through the lens of two parents learning, adapting, and advocating for our child. We also address the many questions we’ve received from family and friends, breaking down complex ideas into simple, honest conversations around diet, safety, and what the future may look like. Along the way, we reflect on powerful stories from other families, highlighting the life-changing importance of early newborn screening and greater awareness. This is not just a story about a condition — it’s a story about resilience, learning, and the reality of parenting when everything changes. Support and follow Teachable the Podcast here: https://linktr.ee/snapperturtlestudios Find more IVA information here: https://rarediseases.org/rare-diseases/acidemia-isovaleric/ Find our amazing Dr. Amal here: https://www.instagram.com/dr.amalaltenaiji/

Topics covered

  • parenting
  • health
  • resilience
  • advocacy
  • metabolic condition

Keywords

  • Isovaleric Acidemia
  • IVA
  • newborn screening
  • diet
  • safety

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