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. What happens when a diagnosis...
203: 12 Years to Diagnosis, DiGeorge Syndrome and Channeling Her Story into Positive Action – Jessica’s Story
Podcast Show Notes
“If you have a question, ask it. You are the parent, you need to know” – Jessica Siddi-Sewart
How can medical parents use their experiences to promote action and advocacy?
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, like she did when her son was searching for and finally diagnosed with DiGeorge dyndrome. 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.
For Jessica’s son, it took 12 years and hundreds of doctor appointments to receive a concrete diagnosis: DiGeorge Syndrome. She shares her journey and learned the importance of finding support and resources from families walking through similar challenges.
“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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