What’s it like to raise a child with a rare disease? In this episode of A Place of Yes, Heather connects with Jeff Ames, whose daughter Tessa lives with Dravet syndrome. As rare disease parents, Heather and Jeff share the unique struggles and unexpected joys of raising a child in a world that feels so different from everyone else’s.
They discuss the emotional toll, the constant challenges, and the overwhelming love that defines their journeys. It’s a conversation about resilience, community, and what it means to live a life that few others can truly understand.
FIND HEATHER & JAKE’S HELP FROM HEAVEN
❤️ Heather’s Instagram: https://www.instagram.com/heathersstraughter/
❤️ A Place of Yes Podcast Instagram: https://www.instagram.com/aplaceofyespodcast
❤️ 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
Watch on YouTube
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
How 2 Families Found Hope in Adaptive Equipment
“When we first got the trike, he couldn’t stop smiling. It was like he realized for the first time that he could move on his own terms—and he hasn’t stopped since.”
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.”