Behind every rare disease diagnosis lies a story of heartbreak, resilience, and unshakable love. Heather sits down with Effie Parks, award-winning host of Once Upon a Gene and mother to Ford, who lives with CTNNB1 syndrome. Together, they uncover the raw truths of parenting a child with special needs—from the moments of joy to the isolation no one talks about. Effie’s journey is a testament to the power of advocacy, community, and finding light in the darkest days. This episode will leave you inspired and deeply moved by the resilience of families navigating the rare disease world.
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FIND HEATHER & JAKE’S HELP FROM HEAVEN ⬇️
❤️ Heather’s Instagram: https://www.instagram.com/heathersstraughter/
❤️ Jake’s Help from Heaven: https://jakeshelpfromheaven.org/
❤️ Jake’s Help from Heaven IG: https://www.instagram.com/jakeshelp/
❤️ Facebook: https://www.facebook.com/jakeshelpfromheaven
❤️ Our YouTube Channel: https://www.youtube.com/@APlaceofYesPodcast
Connect with us on social media:
• Heather’s Instagram
• Jake’s Help from Heaven
• Jake’s Help from Heaven IG
• Facebook
• Our YouTube Channel
Keep scrolling for the episode transcript.
Checkout our other episodes
Losing a Son to Rare Disease: Parental Isolation & Grief
“When you’re a rare parent, it’s not just the disease—it’s the loneliness, the constant feeling that no one really gets it. And when your child is gone, that grief is even more complicated. Jack taught me so much. I want other parents to know they’re not alone.”
What It’s Like to Lose Your Best Friend at 18
“She was supposed to be here for the birthdays, the firsts, the little moments that feel big. But she’s not—and that’s the part that never stops hurting.”
Why I Quit My Job to Grieve My Parents’ Deaths
“I realized I’d never actually stopped to grieve. Not after losing my mom, my dad, or my marriage. So I quit my job and took a year to do it. That time changed everything—and now I’m helping others do the same.”