Episode 56 | Effie's Story - A son with a Rare Disease , CTNNB1

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.

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