PWS Unfiltered

You're sitting in your car on your lunch break — not eating, not resting — on hold with insurance, hoping you get a real person before you have to go back inside. That's the reality no one tells you about when your child has Prader-Willi Syndrome. It's not just the caregiving. It's the second full-time job of fighting systems that weren't built with your family in mind — i...

Before you Google it — listen to this first. Prader-Willi Syndrome has a clinical definition. It has a Wikipedia page. And none of that comes close to telling you what it actually looks like to live inside of it every single day. In this episode, Tanya breaks it down the way she wishes someone had broken it down for her — not the textbook version, but the real one. The hunger that never turns off....

Before there was a diagnosis, there were years of knowing something was wrong and not being able to prove it. In this episode Tanya goes back to the very beginning — to Aiden's birth during COVID, to the NICU, to the years of appointments and therapies and unanswered questions that followed. She talks about the guilt that settled in almost immediately after birth and the weight of carrying it...

May 1st marks the beginning of PWS Awareness Month — and there's no better way to start than with the story that started it all. In this first episode, Tanya shares her unfiltered truth. Before she could ask anyone else to be vulnerable in this space, she needed to show up first. So that's exactly what she does. She talks about Aiden — not his diagnosis, but who he actually is. Headstron...