Seeing the Unseen: Navigating CVI and the Power of Being Heard - Part 1 of 2

What happens when a medical professional dismisses your concerns about your child’s health? How do you move forward when you're made to feel like you're imagining things?

If you're a parent of a child with a rare disease, you've probably faced moments of disbelief from others—especially from those you trusted to help. This episode dives into one such experience, sharing practical insights on how to navigate this emotional and isolating journey while advocating for your child.

Learn how to recognize the signs of cortical visual impairment (CVI) and why early identification matters.

Discover strategies to manage the emotional toll of feeling dismissed or gaslit as a rare disease parent.

Gain actionable tips for building resilience and finding allies who truly listen and care.

Hit play now to hear this week's episode and equip yourself with tools to advocate for your child, even when the system feels stacked against you!