My journey as a mom and caregiver to a 10-year-old boy with Prader-Willi Syndrome (PWS) is one of immense love, resilience, and advocacy. When my son was diagnosed, I entered a world that I had never known existed—one filled with challenges, but also profound moments of joy and connection.

Prader-Willi Syndrome is a rare genetic disorder that affects many aspects of a child’s life, including their physical, mental, and emotional development. For my son, it means constant medical appointments, therapies, and navigating a unique set of needs. It also means managing his fixation on food and his constant questions about meals, as he is not yet in hyperphagia, one of the hallmark traits of PWS, while ensuring he feels included and understood in a world that often doesn’t cater to children like him.

As his mom, my days are anything but ordinary. From carefully planning meals to avoid triggers and maintain his health, to advocating for his educational needs in school, I have become an expert in areas I never imagined—nutrition, education law, and rare disease advocacy. Each day begins with structure and routine, as predictability is key to helping my son feel secure. But every day also brings its share of surprises and opportunities to learn and grow together.

One of the greatest challenges of raising a child with PWS is the emotional toll it can take. Watching my son struggle with things many take for granted is heartbreaking. At the same time, his resilience and determination inspire me. He has taught me to celebrate the small victories—a day without meltdowns, a successful trip to a friend’s birthday party, or mastering a new skill in therapy. These moments remind me of his strength and the beauty of his spirit.

As a caregiver, I’ve learned the importance of building a community of support. Connecting with other families who have children with PWS has been invaluable. Sharing experiences, advice, and encouragement helps me feel less alone in this journey. It’s also motivated me to advocate for greater awareness and support for families like ours, whether by engaging with schools, healthcare providers, or policymakers.

There are times when the weight of caregiving feels overwhelming. Balancing the needs of my son with the needs of my other children, my own health, and my relationships is a constant juggling act. But through it all, I’ve learned to find strength in vulnerability. Reaching out for help and prioritizing self-care, even in small ways, allows me to be the mom my son needs.

My son’s laughter, curiosity, and kindness are daily reminders of why this journey is worth every sacrifice. He has shown me the depths of unconditional love and the power of perseverance. While the road ahead may be unpredictable, I know we will face it together, one step at a time, with hope and determination guiding our way.

Being a mom and caregiver to a child with Prader-Willi Syndrome is not just a role; it is a profound and transformative experience. It has shaped who I am, deepened my empathy, and given me a purpose I never could have imagined. My son’s life is a testament to the strength of the human spirit, and I am honored to walk this journey alongside him.

My Motivation

My children have always been my inspiration. When Cade was diagnosed I was initially crushed, but I vowed that I would give him the world and we would do everything in our power to keep him safe and happy.

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