Rare Disease: 12 Years to Diagnosis, Emotional Resilience, and Channeling Pain into Action
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January 24, 2024
Published Date:
As a child life specialist, I know that there is not one "normal" or "best" reaction for a parent when their child receives a medical diagnosis.
Today's guest, Jessica Siddi-Sewart and she helps us reflect on the different stages parents go through when facing a medical diagnosis for their child. She is also a mother of three, a paralegal, and a business owner.
I had the pleasure of meeting Jessica during our time at the American Academy of Pediatrics Conference this past October and was instantly drawn to her products and knew I wanted her to join me on the Child Life On Call podcast. Her company Puffaluffs Inc. was inspired by a personal experience with one of her sons. After giving birth at 28 weeks, a NICU stay, and a long and emotional journey to receiving a diagnosis, Jessica still found a way to make meaning and give back.
"It teaches you to pivot. It teaches you, you know, to learn different things and be okay. It is what it is and you will be okay
The resources mentioned in this episode are:
Diagnosis resources for families with DiGeorge include:
About Katie Taylor, CCLS and Child Life On Call:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform revolutionizing pediatric healthcare by putting parents at the center of the medical journey. With over 13 years of experience as a certified child life specialist, Katie has made significant contributions to the field of child life and the families she's served with over a decade of working at the bedside. She is an accomplished author, engaging child life and entrepreneurship speaker, and the Child Life On Call Podcast host. Katie's work emphasizes the vital role of child life services in supporting caregivers and enhancing children's medical journeys.
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