Dr. Al Freedman knows firsthand what it’s like to be a parent in the rare disease world—his son Jack lived with Spinal Muscular Atrophy for 26 years. In this conversation, he joins Heather to talk about the deep grief and isolation that comes with rare parenting, and what it means to lose a child to a disease no one else seems to understand. As both a psychologist and a rare disease dad, Dr. Freedman brings a unique perspective—sharing how his personal experience shaped the work he does to support other families navigating similar journeys. This episode is a testament to the love, resilience, and heartbreak of rare parenting—and the community that can be built around it.

Connect with Dr. Al: https://www.rarecounseling.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

 

Remembering Jake: Honoring our Son and Coming Together for Families With Disabilities

Remembering Jake: Honoring our Son and Coming Together for Families With Disabilities

Picture this—a packed restaurant, margaritas flowing, and a room full of people who love Jake. That’s Cantina Day.

It’s more than just a tradition—it’s a celebration of his life, a space to share memories, and a reminder that grief doesn’t have to be lonely. We sat down with a few attendees to talk about the podcast, their own grief journeys, and, of course, some unforgettable Jake stories.

From helping kids take their first steps to empowering families to navigate the impossible, Joe shares the passion, innovation, and personal stories that fuel Rifton’s mission.

This episode will inspire, motivate, and prepare you to rethink how small changes can have a massive impact. Don’t miss it!

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.

The Importance of Adaptive Equipment for Medically Complex Individuals | Rifton Equipment

The Importance of Adaptive Equipment for Medically Complex Individuals | Rifton Equipment

What if the right piece of equipment could restore someone’s independence? Heather sits down with Joe Keiderling, the heart and mind behind Rifton Equipment, to discuss how their adaptive designs are more than just tools—they’re lifelines.

From helping kids take their first steps to empowering families to navigate the impossible, Joe shares the passion, innovation, and personal stories that fuel Rifton’s mission.

This episode will inspire, motivate, and prepare you to rethink how small changes can have a massive impact. Don’t miss it!

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.

What No One Tells You About Special Needs Parenting

What No One Tells You About Special Needs Parenting

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.