When Laura's daughter was diagnosed with leukemia, her world stopped. What followed was a powerful journey through fear, resilience, and fierce advocacy. In this episode, Laura DeKraker Lang-Ree—a lifelong educator and now author of The Cancer Parent’s Handbook—opens...
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.
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