by JHFHBrightSighted | Jun 26, 2025 | Blog, News, Podcast
At just 19 years old, she lost her mom to Alpha-1 Antitrypsin Deficiency—a rare genetic disorder that went undiagnosed until it was too late. In this episode, she shares what it was like to watch her mom suffer without answers, and how the grief of that experience...
by JHFHBrightSighted | 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...
by JHFHBrightSighted | May 1, 2025 | Blog, News, Podcast
Jake’s birthday is coming, and it still hurts just as much as it did that first year. In this solo episode, Heather opens up about what it really feels like to face another year without her son—the lead-up, the dread, the heartbreak that anniversaries bring when...
by JHFHBrightSighted | Apr 24, 2025 | Blog, News, Podcast
Jessica Patay is a full-time caregiver to her son with Prader-Willi syndrome—and the founder of We Are Brave Together, a global support network for caregiving moms. In this episode, she joins Heather to talk about the emotional toll of rare parenting, why self-care...
by JHFHBrightSighted | Apr 17, 2025 | Blog, News, Podcast
After losing her daughter Kelsey, Debbie Waffle was left with a grief that didn’t fade—but she also felt a quiet pull toward purpose. In Part 2 of her conversation with Heather, Debbie shares how she began to live for Kelsey—writing her book My Grief Jar and training...
