Maylee is your typical smiling, bright-eyed 3-year-old girl who is trapped in a body that fails her daily—She is aware of everything around her. That was the hard part of receiving this diagnosis. Knowing she was “in there” and begging to get out. Trying to explain life with Rett Syndrome is tough. It is always changing. One day you are dealing with one set of symptoms and then the next day it is something new. Always changing and throwing curve balls left and right, but one thing that seems to stay the same is the amount of love and perseverance these sweet kiddos have. Their drive to just continue to push forward is amazing.
We have only been on this journey for a year now and where we have found ourselves today is something I prayed for every day. I have prayed for the strength to push Maylee forward and for her to stay strong and healthy. We never would have been able to get to this place without help from so many supportive families and organizations devoted to help making this disorder feel less isolating. We have a great group of people standing behind us determined to further research, push awareness and support families on this journey. Life with Rett can get ugly at times, but the beautiful moments of milestones being met, hearing her voice come out on her eye gaze, and watching her eyes light up overpowers the ugly. I thank God every day for our sweet girl.