In this week’s incredibly honest and profound episode, we sit down with Jeff Loving, a husband, proud NICU dad, and the author of Holding Onto the Light: A Father’s Journey Through Loss and Healing. Jeff shares the deeply personal, often unspoken, side of grief: the...
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…
Understanding Homocystinuria (HCU): How a mother uncovered her son’s diagnosis- Melanie’s Story
As parents, we rely on routine tests to tell us our children are healthy. For Melanie and her husband, Ryan, in Vancouver, British Columbia, it took a routine eye doctor's appointment to uncover a startling truth about their 12-year-old son, Masen, an energetic hockey...
Autism, Advocacy and the Power of a Medical ID: Tara’s Story
“You don’t have good days and bad days — you have good moments and tough moments. And if you only count the bad ones, you’ll miss all the silver linings.”- Tara Cohen In this deeply moving and empowering conversation, Tara Cohen, Executive Vice President at Lauren’s...
