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:

🌟 https://effieparks.com

Find Heather and Jake’s Help from Heaven:

❤️ 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

 

 

I Traveled to Guatemala to Honor My Late Daughter | Losing Her to a Rare Disease

I Traveled to Guatemala to Honor My Late Daughter | Losing Her to a Rare Disease

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How One Tragic Loss Changed a Family Forever: Grieving a Husband & Father

How One Tragic Loss Changed a Family Forever: Grieving a Husband & Father

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The Doctors Were WRONG: A Mother’s Fight for Her Son with 15 Diagnoses

The Doctors Were WRONG: A Mother’s Fight for Her Son with 15 Diagnoses

When we were told halfway through my pregnancy that our baby wouldn’t survive, our world shattered. But Jude had other plans. Now, at 13 years old, he’s living proof that the doctors were wrong. With 15 medical diagnoses, including the rare PHGDH deficiency, our journey has been anything but easy—countless surgeries, hospital stays, and moments of uncertainty. But through it all, there’s been love, resilience, and a strength I never knew we had. This is our story.