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When Gina’s six-year-old son began showing unusual sleepiness, tantrums, and sudden collapses, she never imagined it would lead to a diagnosis of narcolepsy with cataplexy. In this heartfelt and insightful conversation, Gina shares the highs and lows of navigating a rare sleep disorder as a parent and caregiver.

From the emotional rollercoaster of seeking answers to the relief of finally having a diagnosis, Gina offers an unfiltered look at the realities of raising a child with narcolepsy—balancing treatment trials, advocating in the school system, managing emotional well-being, and holding the family together through it all.

She discusses the transformative moments that shifted her perspective, the importance of trusting maternal instincts, and why building the right medical team is vital. Gina’s story is more than a caregiver’s account—it’s a testament to resilience, advocacy, and love.

Whether you’re a parent, a person living with narcolepsy, or simply curious about the human side of chronic illness, this episode offers both practical wisdom and heartfelt inspiration.

Key moments:

• 03:13 – First symptoms and the long road to diagnosis
• 06:03 – Receiving the narcolepsy diagnosis
• 12:02 – Learning to trust maternal instincts
• 15:14 – Puberty’s impact on symptoms
• 22:15 – Caregiver grief and acceptance
• 36:46 – Navigating school accommodations
• 39:35 – Final reflections and words of encouragement

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***If you find these symptoms relatable, please seek medical advice.***