As if our hands weren't full enough with four wild children; in late February 2022, we were given the answer as to why our youngest baby was having seizures. Amelia was diagnosed with CLN2 also known as Batten Disease. Although Amelia had been developing as a typical toddler, we did begin to see the signs of her disease. This diagnosis brought our world to a screeching halt and left us reeling searching for answers. As with all significant live altering events, we could not and still have not fully processed this diagnosis. The days that followed were a blur of phone calls, appointments, back and forth to hospitals, MRIs, and brain surgery to allow Amelia to receive critical Enzyme Replacement Therapy (ERT) of Brinura every two weeks. All of these things happened within three weeks of diagnosis and Amelia received her first treatment in Norfolk, Virginia, the only facility available within driving distance for us. The weeks and months that followed were just as fast paced as we worked though insurance companies, more treatment options, getting mobility devices, anything that would help keep Amelias quality of life the best it can be as she fights this terrible disease. Traveling to Norfolk every two week was obviously unsustainable, and we were fortunate enough to find an amazing doctor at the Duke Children's hospital in Raliegh, North Carolina. Her team and the Duke hospital staff along with our insurance representatives went great lengths to set up treatments for Amelia, and treatments have been so much easier ever since. We LOVE our Mimi and are doing everything we can to keep her as happy and healthy as possible. At the end of the day the HOPE to have more time with our children is all we wish for. Even though we are fully aware there is no CURE for our beautiful daughter, or the children like her, there is no question this treatment gives them life!
