Amelia

“We named our daughter after Amelia Earhart because we admired her bravery, her sense of adventure and how she never liked to keep her feet on the ground for too long. It turns out our girl ended up embodying a very different aspect of the famed pilot that we did not expect; she was lost and we didn’t know where to even begin looking to find her. For 13 desperate months we relentlessly pursued answers and pushed further and further down that rabbit hole that was genetic testing where we knew our lost girl most likely was. We now know in the world of diagnostic odyssey’s this isn’t even considered long at all but at the time it felt like forever. In April 2020, during a global pandemic that brought the world to its knees and closed down operations at labs and universities everywhere, I sat on the phone with a genetic counselor at Seattle Children’s Hospital. She told me Amelia had a mutation on her NAA10 gene that neither my husband or I carried genetically and that our girl was officially diagnosed with Ogden Syndrome.”

Millie is a bubbly, courageous and incredibly joyful little girl who is still deciding on the perfect wish. We can’t wait to see what you choose, Millie!