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
Parenting a Dying Child | Life After Menkes Diagnosis
After losing his son Lucas to Menkes Syndrome at just 11 years old, Daniel DeFabio dedicated himself to the rare disease community.
Teen cancer patient Olivia Allen’s final words & the “Live like Liv” legacy
“Dear God, I just want to live…” was the last journal entry made by 18-year-old Olivia Allen. The Saratoga Springs teen was diagnosed with Acute Myeloid Leukemia (AML), a rare form of cancer, and passed away within the same year – shocking her community.
A Life Cut Short: The Tragic Murder of Philip Rabadi
Shaw Rabadi, Philip’s dad found his son’s body. In this episode, we discuss the grief of losing a loved one to such a heinous crime.



