"I had to teach myself to advocate – no one should leave a hospital with more trauma than they came with."- Julie Walters In this episode, Katie speaks with Julie Walters, a mom of two neurodivergent children, entrepreneur, and fierce advocate for inclusion and...
Episode 56 | Effie’s Story – A son with a Rare Disease , CTNNB1
Podcast Show Notes
Katie, Certified Child Life Specialist interviews Effie Parks, mom to Ford who was born with a rare disease called CTNNB1.
Effie is the host of the Once Upon a Gene podcast and in this episode she shares about her journey into parenthood and what it’s like raising a child with special needs.
She describes how:
- she learned to advocate for her son’s needs
- self-care is non-negotiable
- she came to the realization that although parenting is different than she envisioned, her son has taught her more than she could ever imagine.
Listen Effie’s podcast, Once Upon a Gene, or watch her new show on the Disorder Channel.
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 your self and your family through life’s challenges. We are so glad you are here.
You Might Also Like…
241: How a Kidney Transplant started a mission to help Transplant Families-Cheryl + Kimmy’s Story
“Our goal wasn’t to build something huge overnight – it was to listen to families, fill the gaps, and take that first step.” – Cheryl Whitty We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information...
240: How to Stay Calm During Your Child’s Medical Procedures
In this episode of Child Life On Call, host Katie Taylor, a certified child life specialist, shares personal experiences and practical advice on maintaining calm during your child's medical procedures. Katie recounts a traumatic incident with her daughter, emphasizing...