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...
by JHFHBrightSighted | Apr 10, 2025 | Blog, News, Podcast
Debbie Waffle built a life filled with joy, purpose, and hope—but nothing could prepare her for what came next. Her daughter Kelsey’s medical challenges grew more complex over time, leaving Debbie desperate for answers and overwhelmed with fear. And when Kelsey died,...
by JHFHBrightSighted | Apr 2, 2025 | Blog, News, Podcast
Being a rare disease parent means living in a world of unpredictability—and in this powerful follow-up episode, Jessica Troiano shares what that really looks like. From a terrifying recent emergency surgery to the countless difficult decisions she’s had to make over...
by JHFHBrightSighted | Mar 6, 2025 | Blog, News, Podcast
What do you do when doctors tell you your baby won’t survive? For Jessica Troiano, the answer was simple: fight. In this episode, Jessica shares her journey of raising Jude, her 13-year-old son with a rare genetic condition, PHGDH deficiency, and 15 medical diagnoses....
