Episode 74 | Jessica’s Story - A son with Prader-Willi syndrome
Release Date: 06/30/2021
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info_outlineKatie, 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:
- How hearing from medical staff, “I’ve never heard of this before” is NOT helpful
- What Jessica wished she would have known 18 years ago about where she is today
- 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.
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Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges. We are so glad you are here.