When our family first encountered the daunting diagnosis of Gorham’s Stout disease for our son Zach, we stepped into a world filled with uncertainty. However, this journey took a hopeful turn when we discovered the Lymphangiomatosis & Gorham's Disease Alliance (LGDA). In this blog, I want to share our story and how the LGDA has been a pivotal source of hope, support, and community.
The Early Days: Facing the Unknown The initial phase after diagnosis was the toughest. We were bombarded with worst-case scenarios and grim research studies, which painted a bleak picture. But amidst this darkness, we found a glimmer of hope — the LGDA.
A Beacon of Hope: Discovering the LGDA The LGDA wasn't just another support group; it was a lifeline. Founded by Jana Sheets and her father, Jack, the organization's mission resonated deeply with us. Jana's empathy, combined with her personal journey, offered us the understanding we desperately needed. The LGDA connected us to a knowledgeable doctor, introduced us to another patient near my son’s age, and provided a community of families who truly understood our struggles.
Transforming Despair into Hope The most significant gift from the LGDA was hope. Instead of feeling isolated, we felt empowered. The resources, education, and support from the LGDA helped us manage my son's symptoms and significantly improved his quality of life. Today, he is not just surviving but thriving, thanks to the unwavering support of the LGDA.
A Call to Action: Joining Hands in Hope As a token of our gratitude and to keep this circle of hope expanding, I became a monthly donor to the LGDA. Now, I extend this invitation to you. Your contribution can help provide the same support, resources, and hope to other families facing this rare disease. Together, we can ensure that no one has to navigate this journey alone.
A Community United in Hope The LGDA stands as a testament to what can be achieved when people come together in the face of adversity. It's a community where hope is nurtured, and lives are transformed. As we continue to support each other, we reinforce the belief that together, we are stronger, and no challenge is too great to overcome.
I invite you to join us in this mission of hope. Your support can light up someone's world, just as it did for my family.
Proud Parent and Monthly Donor to the LGDA