Child Life On Call: Parents Of Children With An Illness Or Medical Condition Share Their Stories With A Child Life Specialist

"What we realized was that rare isn’t as rare as we think—there are so many of us out here searching for answers, fighting for our kids, and trying to make a difference."- Maria Granados We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website. What if a simple miscommunication in the hospital could have cost your child their life? For Maria and Matt Granados, parents of a daughter with Pyroxd1, that terrifying moment led to a groundbreaking realization—and a mission to help other families facing rare diseases. In this powerful episode, we dive into: ✅ The challenges of diagnosing and living with Pyroxd1, a rare neuromuscular condition   ✅ A near-fatal hospital mistake that could have changed everything     ✅ How they turned their personal struggles into Take Part Foundation, a nonprofit funding rare disease research     ✅ The power of storytelling, advoca