Prader-Willi Syndrome (PWS): Navigating Diagnosis and Daily Life

Katie, Certified Child Life Specialist talks with Jessica Patay, Founder and Executive Director of We Are Brave Together.

Her own story as a mom of a child with special needs began in 2003 when her second son, Ryan, was born and diagnosed with a rare, genetic disorder, called Prader-Willi syndrome. Within two days of receiving this diagnosis, she received a phone call from a mentor mom from the Prader-Willi California Foundation. Immediately she felt relief and comfort knowing she was NOT ALONE.

In this episode, we talk about:

1. How hearing from medical staff, "I've never heard of this before" is NOT helpful
2. What Jessica wished she would have known 18 years ago about where she is today
3. How community has shaped her ability to cope and thrive

Learn more about Jessica's organization and make sure to follow her on Instagram and Facebook.

Guest: Jessica, Released: Jun 30, 2021

When parents feel empowered, everyone wins – kids thrive and the care team excels!

Links and Resources:

• SupportSpot Website
• Download SupportSpot iOS or Android

• 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface.
• 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better.
• 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child.
• 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare

Learn more here.

Meet the host:

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.

Instagram.com/childlifeoncall

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 are 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.

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