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

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.

Transcript

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We got the call confirming it was PWS, and for a split second, just a split second, I felt something like relief, like a weight lifted. We finally had a name. And then reality sank in. Welcome to PWS Unfiltered, a podcast where every family story is valid, every experience is welcome, and no one has to navigate Proder Willie syndrome alone. I'm your host Tanya, and I built this space because I know how isolating this journey can be. So pull up a seat. You belong here. When I envisioned PWS Unfiltered, I had every kind of family in mind. Those who just got the diagnosis and don't know where to turn, the ones who have been at this for years and are completely burnt out, whether you have a strong support system or you have none, those families who are thriving and the ones still frozen, still standing in that moment when everything changed. Families from different backgrounds, walks of life, different stories, every single one of them. If you found this podcast, however you got here, I want the first thing you feel to be a sigh of relief. I want you to feel welcome, safe, and seen. Because that is my promise to you from day one and every single episode after it. There is no judgment, no right way to do this, and no one size fits all. However your journey looks, it belongs here. You belong here. And if you're brand new to this, if someone just said the words Prader Willie syndrome to you and you don't know what that means yet, I want you to know you are in the right place too. Pradder Willy syndrome is a rare genetic condition. It affects appetite, metabolism, muscle tone, cognitive development, and so many more things. It looks completely different in every single person who has it, and there is no cure. But there is community, and that's what we're building here. So before I get into anything else, I felt it was right to let you know who I am. Not just as a caregiver, a mom, an advocate, but as a person. I'm Tanya. I was born and raised in Phoenix, Arizona. I feel like I'm pretty down to earth, love to be outdoors, learning about new things, and I love to bake. But more than anything, I love hearing people's stories, understanding their why, what shaped them, and what drives them, which is probably why this podcast felt so natural, even if I'm an introvert. I'm not someone who naturally gravitates toward being in front of people, but to me, some things matter more than what's comfortable. I'm a mom of four, two kids who are biologically mine and two bonus kids from a previous marriage. Family is everything to me. Last year my family and I decided to pack up and move to Minnesota, and we've made it home. Home isn't really a place. It's the people at the center of it. Alright, after talking about me, I want to tell you about Aiden. Not about his diagnosis, I'll get to that later. About him and who he actually is. Aiden is five years old and he is headstrong in the best and most challenging ways. He's loving and vocal. He knows what he wants and he is not shy about letting you know. He loves going outside for walks, playing doctor and playing work. He has this incredible ability to take everyday objects and turn them into whatever he needs them to be, whether that be a tool, a prop, or whatever the moment calls for. He is creative in a way that just stops you in your tracks sometimes. And he is funny. He says the darnest things and somehow always manages to make everybody in the room laugh. The relationship I created with Aiden is gentle. I try to give him a safe space to express himself. When corrections need to happen, I try to do it in a way he can actually understand. It doesn't always go perfectly, but I always make sure we navigate it in a way that keeps his knees at the center. He's my little sour patch kid, sweet and sour all at once. Caring for Aiden has made me grow in ways I never expected. I've become more patient, more understanding of things I don't always have answers for. He's taught me that there is always room for growth, that it's okay to not have it all together. Tomorrow's a new day to try again. And honestly, I think that's something every PWS family needs to hear too. Next, I want to talk about the moment Aidan was diagnosed. It was three months before his fourth birthday, but even before that we knew something was off. When he was born, they thought he was premature, even though I was only a week before my due date. They described him as a floppy baby, saying he couldn't regulate his body temperature and had undecided testes. He was fatigued and had a hard time feeding. Over the years we ended up doing feeding therapy, lots of lab appointments, lots of imaging, and multiple specialists. He wasn't meeting milestones like other kids his age, and we never got any real answers, not once. The process felt long, disappointing, frustrating, and even moments of feeling hopeless. Then in early 2024, after Aiden gained a significant amount of weight, we were told to make a follow-up appointment with his endocrinologist. The doctor took one look at him and said it was either Protter Willie syndrome or Angelman syndrome. She referred us to genetics. We did the testing, and honestly, I was already researching both. In my heart, I already knew it was PWS. Everything surrounding Aiden pointed there. We got the call confirming it was PWS, and for a split second, just a split second, I felt something like relief, like a weight lifted. We finally had a name, and then reality sank in. I was fearful. I was angry, so angry that it took this long. I was sad and mourning. I honestly felt like I went somewhere else, like a dark place, and I cried. I cried so much. And then one day something in me just shifted. I couldn't sit there anymore. I had to keep going. I had to keep learning. I had to find new ways of looking at this that wasn't going to debilitate me. I had to fight the way I would fight for any of my kids. This was the beginning. The beginning of the advocacy, the beginning of everything. I picked myself up and I pushed through. And at some points I burned myself completely out. I had to learn balance, time to research and time to just be present. Time to be a mom and not just Aiden's advocate. It still gets sad sometimes. I don't think that'll ever go away. But I let myself feel it and then I keep going. And even after we had a name, there was still so much to do, so much we had to advocate for, so much we had to educate people on, so much legwork that fell on us. Having a diagnosis didn't mean the doors opened. It meant the real work was just starting. The hardest things to navigate were therapies, what insurance would and wouldn't cover, and the school systems. Those three things alone can bring a family to their knees. What made it feel more isolating is that not many people had heard of PWS. Not many people understood the depths of what his diagnosis actually means. Unless you have the knowledge, the time, the resources, and the support, it gets lonely. It feels lonely, even when you're surrounded by people. Aidan's primary doctor and his endocrinologists were a big part of his journey, and I'm literally so grateful for them. But it wasn't enough. He needed more. Speech therapy, occupational therapy, physical therapy, and what we ran into were long wait lists, stagnant process, and insurance that didn't always want to cover what he needed. It was a long road, and honestly it still is. And that's a big part of why we made the move to Minnesota to get him more, to fight for more. But I want to be honest about something. The reality is not every family can do that. Just pick up and move for better access. Have time to research or the money to bridge the gaps insurances leave behind. Financial stress plays a role in what care looks like. Not having support also plays a role. And those families deserve to be seen just as much as anyone else. And I want to be open. There were stretches of this where I felt like we were doing it alone, where the weight of figuring it all out, fighting for everything, and still showing up every single day fell on us. And if that's where you are right now, if you're doing this without a village, without people who fully understand what you're carrying, I see you. I really see you. You are not doing it wrong. You are doing the impossible, and you deserve support too. What I want every family to know, especially the ones who feel like they're running out of options, is that there is community and togetherness, that where there's a will, there's a way, and when we get knocked down, we have to find a way to get back up. Not because it's easy, but because our kids need us too. That's a big reason we built this. To create something that gives everyone a voice. Regardless of your background, your resources, or how your journey looks. Regardless, full stop. Here's something I've witnessed in PWS spaces that I think we need to talk about openly. Black and white thinking. Comparison, shaming, guilt. Families who are afraid to share a milestone because someone might say their child can't do that. Families afraid to share a regression because of the judgment that follows. And sometimes people are just mean. And that meanness causes silence. It causes families to pull back and isolate even further than they already were. The thing is, every single person with PWS is completely different. What works for one family may not work for another. What one child can tolerate, another cannot. And when we don't understand something, we have a tendency to project our own experience onto someone else's journey. We create our own narrative about what their life should look like based on what ours looks like, and that's not fair. That's not safe, and that's not community. Real community is letting people be, understanding that your experience is yours and theirs is theirs, and both are valid. Real community doesn't shame, compare, or silence. That gap is exactly what PWS Unfiltered is here to fill. When I picture what we're building here, I want it to feel caring and to feel real. I want families to walk away from every single episode feeling like they are not alone. Like someone finally gets it. Like they found their people. I want it to feel unfiltered. This podcast is not going to have all the answers. I don't have all the answers, but what I can promise you is that this is a safe space, a real space, a space where your story matters exactly as it is, where your hard days are welcome and your victories are celebrated, and your silence is never required. Whatever your walk of life looks like, whatever your journey has been, however many times you felt you couldn't share because someone wouldn't understand, this is for you. You are not too much here, you are not alone here. You belong here. That is my promise. That is why PWS Unfiltered exists. Thank you for spending time with me today. Next episode, we're going even deeper into the early days after diagnosis, what we learned, and what I wish someone had told me from the beginning. If this resonated 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. And if you're looking for a place to connect between episodes, we have a private community for exactly that. A space where PWS families can show up, share, and just be understood. The link is in the show notes. Until next time, you are not alone.