What if every milestone your child was supposed to reach came with countless curve balls? For Alexis Kaplan, motherhood quickly turned into a journey of advocacy, strength, and unwavering love as she navigated her daughter Gabby’s complex and rare health conditions....
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…
249:How to Talk With Children About Child Abuse [REPOST]- Jane’s Story
Knowing how to talk to kids about child abuse can feel overwhelming—but it doesn’t have to be. In this impactful episode of Child Life On Call, host Katie Taylor interviews child abuse prevention advocate Jane Donovan—who also happens to be her mom. Jane shares her...
248: MERRF Syndrome and Motherhood: Raising and Remembering Dahlia-Jessica’s Story
"We followed Dahlia’s lead—and Dahlia was not going to let this stop her.” — Jessica Fein What happens when your child’s diagnosis is so rare that no one—including your doctors—knows how to help? For Jessica Fein, navigating life with her daughter Dahlia’s MERRF...
