The Once Upon a Gene ⭐Rare Disease Manifesto ⭐
To my fellow parents on the rare disease journey,
Above all, recognize your resilience and strength as we navigate these uncharted waters. Our paths, marked by unique challenges and unexpected turns, embody the essence of parenthood's relentless spirit and shared experience.
We didn't choose this path - it chose us. Through the depths of our love we embrace the grief that accompanies our journey - the mourning of futures we envisioned and the embrace of a life rich with profound meaning yet wildly different from what we expected.
In our families, courage is found not only in grand gestures but in the quiet, persistent acts of advocacy and care. We share stories of triumph and struggle, weaving together experiences that comfort and inspire action.
We LIVE empathy—fully embracing our children's complexities and extending understanding to ourselves and each other. In our community, we honor the varied ways we navigate our paths, recognizing there's no single right way to parent in this extraordinary world.
Our resilience comes from facing every emotion head-on. We understand the strength in vulnerability, in sharing fears, and in relying on a community that stands with us.
Joy is found in the often - overlooked moments - the small victories, the gentle progress, the shared laughter (often through tears) in the midst of challenges. These instances of happiness illuminate our journey through darker times.
Facing the unknown, we draw on a collective spirit of hope and determination. Our shared experiences become a beacon, a source of comfort, and a driving force.
We acknowledge the grief that walks hand in hand with our journey, not as a weakness but as a testament to the depth of our love and dreams for our children. In this space, we honor the full spectrum of our emotions and experiences.
In this community, you'll find understanding, shared experiences, and a space where your journey is acknowledged and your efforts celebrated.
As we advocate, share, and connect, we pave a path not just for our children, but for the children who come after. Each story shared, each piece of knowledge exchanged, each gesture of support adds to our collective strength.
Our advocacy, whether loud or softly spoken, is a powerful force. Every action, big or small, contributes to greater awareness, research, and a more inclusive world. Do not be intimidated. Remember who you are. Notice what makes you feel warm and go there.
We invite you to join us, to add your voice to this lighthouse of resilience and hope. Your experiences, your challenges, and your victories help illuminate the way for others on this path. It will be a lifeline for someone.
In this journey, you are never alone. Your grief, love, and advocacy nurtures a community that stands resilient in the face of uncertainty. Together, we are a force of change, compassion, and enduring hope, united in our mission to create a brighter, more understanding world for our extraordinary children. It is our duty to leave this place better than we found it.
Remember, in this community of rare disease families, every story matters, every effort counts, and every heart is connected. We are stronger together and are empowered by the love that guides us.
-Effie Parks