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Losing a Son to Rare Disease: Parental Isolation & Grief

by | Jun 12, 2025 | Blog, News, Podcast

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.

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