Got something on your heart or want to share your story on the podcast? Tanya reads every message personally.

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.

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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.