Our Story
Marshall was born on December 15, 2019. On December 27, 2019, we received confirmation of his Pompe Disease diagnosis. The questions, darkness and fear that followed were eventually replaced by gratitude—for an early diagnosis, increased understanding, and prompt treatment.
While Pompe is part of Marshall’s life and ours, it isn’t the only part. Marshall is full of curiosity. He is strong, feisty and generous with affection. Marshall loves his dog and works hard to keep up with his older siblings, seemingly determined to do everything the big kids do.
Marshall also lives with a rare disease. In between the moments of laughter, learning, exploration and exasperation that childhood brings, we navigate infusions, research, therapies and advocacy. As a family, we climb this mountain together, bolstered by the support of loved ones, strangers who have followed our journey, and an amazing team of healthcare professionals.
Our Pompe advocacy began at home, as we learned all we could about how to best support Marshall. Today, that advocacy extends far out into the world. We share our story and give our time to help advance causes close to our hearts and directly related to Pompe. And every year on December 27, we mark the occasion of Marshall’s diagnosis with our annual donation to Duke Pompe Research.
We climb this mountain with fierce love and hope in our hearts. Follow along with us on Facebook, where you can see Marshall’s smile, mark his milestones with us, and support those living with Pompe Disease.