Episode Details

📢 This is a special repost of one of our most heartfelt and insightful episodes. Whether this is your first time hearing Jessica's story or a revisit, her perspective as a mom of a child with Prader-Willi Syndrome will stick with you. This month is also Prader- Willi Syndrome awareness month.

What happens when a diagnosis changes everything you expected about motherhood? For Jessica Patay, it sparked a journey through fear, resilience, advocacy, and ultimately, the founding of an incredible nonprofit called We Are Brave Together.

In this deeply moving episode, Jessica opens up about:

✅ Her son's diagnosis with Prader-Willi Syndrome and the earliest signs

✅ The challenges of hypotonia, feeding tubes, and navigating early interventions

✅ How her family balances safety, structure, and joy with a life-altering genetic condition

✅ The impact of anxiety and food-seeking behaviors in PWS

✅ The emotional toll of parenting a medically complex child—and why self-care is essential

✅ Her mission to connect moms through retreats, support groups, and honest conversations

Whether you're a parent of a child with a rare diagnosis, a caregiver, or a child life specialist, this episode offers comfort, validation, and powerful insight.

⏱️ [00:00] – Meet Jessica Patay & Her Family A mom of three from California and founder of We Are Brave Together

⏱️ [04:00] – Ryan's Birth and First Signs Something Wasn't Right From a quiet newborn to a NICU stay, and the challenges of a delayed diagnosis

⏱️ [08:00] – Diagnosis: Prader-Willi Syndrome How a Google search and a persistent dad led to answers

⏱️ [10:00] – The Emotional Impact of Diagnosis The grief, the fog, and how Jessica slowly found strength

⏱️ [14:00] – Life with Feeding Tubes and Early Interventions Occupational, speech, and physical therapy in the early years

⏱️ [19:00] – Living with PWS: Hypotonia, Delayed Milestones, and Growth Hormone Ryan's journey to walking at age three and building muscle

⏱️ [20:00] – When Food Becomes a Medical Emergency How the insatiable food drive in PWS shapes daily life—and safety plans

⏱️ [24:00] – Creating a Safe Home for Ryan Locked kitchens, food schedules, and adapting to his needs as he grows

⏱️ [26:00] – Rethinking Success: What Matters Most The shift from pushing academics to prioritizing happiness, safety, and stability

⏱️ [29:00] – Parenting Through Anxiety and Fatigue How PWS affects mental health—and how Jessica copes with it all

⏱️ [32:00] – Self-Care Without Shame Why letting go of perfection and choosing peace is essential

⏱️ [38:00] – Founding We Are Brave Together Jessica's mission to combat caregiver isolation through connection and retreats

⏱️ [42:00] – How to Get Involved Join support groups, start a chapter, and access online resources

⏱️ [44:00] – What Ryan Has Taught Jessica A beautiful reflection on motherhood, perspective, and being changed for the better

🌐 Learn More: We Are Brave Together

📲 Follow Jessica on Instagram: @wearebravetogether

🎙️ Listen to Jessica's Podcast: Brave Together with Jessica Patay

📘 Explore Support for PWS: Prader-Willi California Foundation

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