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
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.”