Navigating Systems

Navigating Systems

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 — insurance denials, IEP meetings, waiver programs, providers who still don't quite get it. In this episode, Tanya gets into all of it. What it actually looks like to navigate schools, insurance, and support services when your child has complex needs. The wins that took years. The losses that still sting. And what she wishes every parent new to this journey knew before walking into their first meeting. This one's for every caregiver who has ever hung up the phone and just sat there for a minute before going back in. PWS Unfiltered is a podcast for families living the unfiltered reality of Prader-Willi Syndrome. New episodes drop on the 1st and 15th. Got something on your heart or want to share your story on the podcast? Tanya reads every message personally. [https://www.buzzsprout.com/2613673/fan_mail/new]

What PWS Really Is

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. The misconceptions that make families feel invisible. The parts of this life that are hard to explain to people who haven't lived it. This episode is for the families who already know. And for the people who want to understand — really understand — what PWS is. PWS Unfiltered. No filter. No sugarcoating. Just the truth. Got something on your heart or want to share your story on the podcast? Tanya reads every message personally. [https://www.buzzsprout.com/2613673/fan_mail/new]

The Day Everything Changed

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 alone. She talks about being dismissed by providers, switching doctors, and what it finally felt like to find someone who actually listened. She talks about the genetic testing that revealed Aiden's specific PWS subtype — maternal UPD — and what it meant to see the word maternal and feel that familiar guilt come flooding back. She talks about what happened after the diagnosis, including a surgery that went in a direction no one prepared her for and how she found out about it. And she talks about what she wishes someone had told her — about documentation, food security, the school system, and what it actually looks like to build a life around a child whose hunger never turns off. This episode is for every parent who has ever sat in a waiting room feeling invisible. Every caregiver who has questioned their own instincts. Every mom or dad who has blamed themselves for something that was never their fault. You were not overreacting. You were not crazy. You were right. 🔗 Join the PWS Unfiltered Community on Facebook: https://www.facebook.com/groups/pwsunfiltered [https://www.facebook.com/groups/pwsunfiltered] PWS Unfiltered releases new episodes on the 1st and 15th of each month. This podcast shares personal experiences and is not medical advice. Always consult your care team for clinical decisions. Got something on your heart or want to share your story on the podcast? Tanya reads every message personally. [https://www.buzzsprout.com/2613673/fan_mail/new]

My Unfiltered Truth

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. Headstrong, funny, creative, and her little sour patch kid. She talks about the years of searching for answers before his diagnosis at nearly four years old. The split second of relief when they finally had a name. And then the reality that sank in after. She talks about what came next — the therapies, the insurance battles, the school system, the isolation, and the moments she burned herself completely out. She talks about what she witnessed in PWS spaces that made her want to build something different. And she talks about why PWS Unfiltered exists — because every family deserves a space where their full story is valid, their experience is welcome, and they never have to feel alone in what they're carrying. This is the episode she wished someone had made when she was sitting in that moment where everything changed. If this resonates with you — share it with a family who needs it. And if you have a story you want to tell, this community is ready to hear it. 🔗 Join the PWS Unfiltered Community on Facebook: https://www.facebook.com/groups/pwsunfiltered [https://www.facebook.com/groups/pwsunfiltered] PWS Unfiltered releases new episodes on the 1st and 15th of each month. This podcast shares personal experiences and is not medical advice. Always consult your care team for clinical decisions. Got something on your heart or want to share your story on the podcast? Tanya reads every message personally. [https://www.buzzsprout.com/2613673/fan_mail/new]