My daughter Josie was diagnosed with Leigh Syndrome in January 2018. She was just three months old. I had never heard of Leigh Syndrome or mitochondrial disease before. I left my job—a career I loved—to care for her full-time. Since then, I have dedicated my life to becoming the best mom and advocate I can be for her. It hasn’t been easy. I have had to give emergency medication for her seizures, change g-tubes, and stay up with her all night to monitor her oxygen levels.
But against all odds, Josie is doing really well. We were told she wouldn’t see her first birthday and she will be three this September. She has learned to roll over when she previously could barely move. She learned to smile again—a skill she lost when she started having seizures. She is a happy kid who loves being outside, baths, and dancing. She is adored by her big sister (5), and her baby sister who was born this February. Our lives look different from other families, but the love we have for each other is just as strong. Josie touches the life of everyone who meets her and I am proud to be her mom.