When my son Cade was diagnosed with Prader-Willi Syndrome, my world stopped. Like any parent, I had dreams for my child—a future that felt limitless. In a single moment, those dreams shifted into something unknown. I was overwhelmed, heartbroken, and honestly, a little lost. But in that same moment, I made a promise: I would give him the world and do everything in my power to keep him safe, happy, and thriving. That promise has guided every step of our journey since.

Cade is 10 years old now, and life as his mom is anything but ordinary. Prader-Willi Syndrome is a rare genetic disorder that affects many aspects of a child's physical, mental, and emotional development. For Cade, that means constant medical appointments, therapies, and navigating a very particular set of needs. It also means carefully managing his relationship with food. He's not yet in hyperphagia, one of the hallmark and most challenging stages of PWS, but his fixation on meals and constant questions about food are already a daily reality. My job is to help him feel included and understood in a world that often doesn't know how to make room for kids like him.

Our days begin with structure. Routine and predictability are essential to helping Cade feel secure—any deviation from the expected can throw the whole day off. From meal planning to educational advocacy, I've become an expert in areas I never imagined: nutrition, education law, rare disease policy. Each day brings its share of surprises, but it also brings opportunities to grow and learn alongside him.

One of the hardest parts of this journey is watching Cade struggle with things other kids do effortlessly. That's heartbreaking in a way that's hard to put into words. But his resilience and his determination to keep trying, inspires me constantly. He's taught me to celebrate small victories: a day without a meltdown, a successful birthday party trip with friends, a new skill mastered in therapy. These moments are everything. They remind me who he is, beyond the diagnosis.

Building a community has been essential. Connecting with other PWS families has helped me feel less alone in this journey and more motivated to act. Whether I'm engaging with his school, working with his healthcare team, or reaching out to policymakers, I've found purpose in fighting not just for Cade but for families like ours across the country.

There are days when the weight of caregiving feels like too much. Balancing Cade's needs alongside my other children, my own health, and my relationships is a constant act of juggling. But I've learned that asking for help is strength, not surrender. Self-care, even in small ways, is what allows me to keep showing up as the mom he needs.

Cade's laughter, his curiosity, his kindness—these are daily reminders of why every sacrifice is worth it. His life is a testament to the power of the human spirit, and I am honored to walk this road beside him. Being his mom has shaped who I am and given me a purpose I never could have imagined.

Editor’s Note:
Patients Rising shares patient stories to raise awareness and reduce isolation among patients and caregivers navigating serious health conditions. Stories are submitted by patients and may be edited for clarity and flow while preserving the author’s voice. The experiences described are personal accounts and should not be considered medical advice.

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