Prader-Willi Syndrome, Motherhood & Finding Community Through Advocacy [REPOST] (253)- Jessica's Story

? 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. Timestamps & Key Topics ?? [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 Withou