RarelyHeard Stories
RarelyHeard opens the door to the real, everyday lives of families raising medically fragile children. These stories are for the parents, caregivers, siblings, and anyone walking alongside rare disease. Through honest conversations and short videos, families share answers to the questions so many others quietly carry from practical advice and helpful equipment to moments of faith, fatigue, and grace. It’s a reminder that behind every closed door, there’s a story unfolding, and when we listen, we discover we’re far less alone than we think.
Featured Stories
Drawing from 13 years with her daughter Anaya, Maria Kashi urges new CDKL5 parents to prioritize quality of life and making memories over the ‘lost time’ spent chasing a cure or obsessing over clinical data.
Drawing from their own journey, Nora’s parents offer new CDKL5 families heartfelt guidance on navigating the waves of grief, rejecting the pity of others, and finding strength in a partnership that celebrates their child’s unique spirit.
These families show new CDKL5 parents that while the diagnosis is life-altering, a resilient community ensures a lifetime of joy, connection, and celebration of their child’s unique spirit.
Do you have a story that deserves to be heard?
We know how isolating this journey can feel—and we know how powerful it is when someone shares the truth of their experience. Whether it’s a practical tip that changed your daily routine, a moment of unexpected joy, or simply the reality of what your days look like, your story matters. If you’re willing to share your family’s journey—even if it feels hard, even if it’s imperfect—we’d be honored to help your voice reach other families who need to hear it. Reach out to us, and let’s talk about how we can share your story with others who are walking a similar path.
