Prader-Willi Syndrome, Motherhood & Finding Community Through Advocacy [REPOST] (253)- Jessica's Story
Release Date: 05/07/2025
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Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
When Camryn’s fearless 4-year-old suddenly became anxious, her gut said something deeper was wrong. Multiple “all clear” evaluations followed—until a post-virus crash at age 6 that led to a diagnosis under the PANS/PANDAS umbrella (autoimmune encephalitis). Camryn shares how a steadfast pediatrician, early referrals, and balancing clinical guidance with peer support helped her daughter reclaim everyday life—right down to summer swim league. She also opens up about protecting her child’s privacy, supporting siblings, starting trauma therapy, and building margin for joy. This is a...
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Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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info_outline📢 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 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
Resources & Links
🌐 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
📱 Access Child Life Tools Anytime: SupportSpot App
Share Your Thoughts!
Were you moved by Jessica’s story? Are you a parent of a child with PWS or another complex diagnosis? We’d love to hear from you! Share this episode, tag us, and help other parents feel less alone.
🎧 Subscribe & Review: Every review helps more families find this supportive community.
🔗 Follow us on Instagram: @childlifeoncall
📩 Contact us: Host Katie Taylor and the team at SupportSpot
🎙️ Listen to More Episodes: Child Life On Call Podcast
The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child is experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.