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.
Find Effie Parks:
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❤️ APOY Instagram: https://www.instagram.com/aplaceofyespodcast/
❤️ 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
Listen on Apple Podcasts | Spotify | iHeartRadio
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
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The Full Catastrophe: Losing a Son and Learning How to Live Again
“You don’t think your life can fall apart more than once—but mine did. And then I lost my son. The only way I’ve survived it is by telling the truth, and trusting that love could still lead me somewhere worth living.”
A Late Diagnosis: Losing My Mom to Rare Disease
“We kept asking doctors what was wrong. No one had answers. And then, just like that, I was 19 years old and saying goodbye to my mom.”