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
“A Rare Disease Took Our Children” | Dahlia’s Mom, Jessica Fein
Jessica Fein’s daughter Dahlia was diagnosed with MERRF Syndrome who passed away 1 week after her 17th birthday. In this episode Fein and Heather talk about the rare disease that took their children.
When Doctor’s Make Mistake’s with Kayla, Jax’s Mom
Jax was diagnosed with autism. In this episode, Kayla, Jax’s Mom reveals a pivotal moment when a medical professional made a mistake.
Running Beyond Limits | Shaun & Shamus Evans’ Marathon Journey
Father and son, Shaun and Shamus Evans inspired the nation with their running achievements. From a 3,200 mile run across America when Shamus was nine, to the prestigious Boston Marathon now that Shamus is 18.