Mila

On July 16, 2011, Mila was born full term and was a happy, healthy baby with big, beautiful eyes. We noticed Mila's first symptoms on July 26, 2013 at Paul Bunyan Land when she complained of how bright it was even though it was overcast. She couldn't look into the distance at the attractions and sunglasses didn't seem to help. Over the next few months, Mila's appetite began to decrease. In October 2013, our pediatrician referred us to an eye doctor, who later discovered bilateral corneal edema. During this time, we also discovered she was low in platelets and had low potassium. In November 2013, our hematologist recommends a bone marrow biopsy to check for leukemia. She was diagnosed with Fanconi syndrome, anemia, and "failure to thrive" and was given platelet transfusions and had a feeding tube placed. We received her diagnosis of a "multisystem mitochondrial deletion disorder" on March 20, 2014. In our meeting, they recommend teaching Mila braille because she is at risk of going blind and deaf. Since then, we have dealt with Mila's nausea and partial corneal transplant.