My daughter Skylar and I started our Rett journey on August 21, 2004, that is a day that I will always remember. Our story is probably pretty similar to many others. When I got the news that Skylar had Rett Syndrome and I began to read about it, the heartache, sadness, feelings of being lost, questions of what to do now and where do we turn suddenly set in. I had a week of nonstop crying, but one day, I looked over at Skylar who was sleeping peaceful and perfect, and I knew from that day forward I would not let Rett syndrome ruin our lives. Skylar and I made a promise to each other to fight together against Rett Syndrome. We were going to enjoy life to the fullest, make sure she enjoyed everything that made her happy, and also push to raise funds toward research for a cure and awareness. Skylar had her first seizure at the age of 3 and in true Skylar fashion when she did something, she did it with a bang… it was a grand mal seizure. That was the first of many hospital stays, medication changes, and doctor visits.
Skylar loved to go swimming and would have lived in the pool if we would let her. She also loved going to Tampa Bay Lightning hockey games, cheering on her FSU ‘Noles, listening to music, going to concerts, and camping with her Nana and Papaw. Skylar loved so many things and we made sure she got to do all of them and more. With the amazing support of my family, friends and the Rett community we found our place and we lived life to the fullest. Skylar was a little diva and so full of sass, I would get phone calls from her school when she would refuse to take her tests, she would tell her teacher (on her eye gaze device) “no tests, I’m sick”. She had, I don’t even know how many boyfriends, and the sassy teenage eye rolls and looks she gave were all part of her spunk. I always told her that she needed to control her facial expressions because anyone could tell what she was thinking just by the look on her face. Yes, our life was full of doctor appointments, therapies, surgeries, and hospital stays, but Skylar fought with everything she had, and always with a smile of her face—that twinkle in her eye and the love of life that she had.
On February 10, 2019, Skylar lost her battle to Rett Syndrome. I was lost, heartbroken, angry, did not know again where to turn or what to do as I had just lost my best friend, my hero, my angel, my whole world. Again, my Rett family was there for me, supporting me, letting me cry no matter what time of the day or night it was. At Skylar’s funeral, every seat was taken and there was standing room only—people were even standing outside as the inside of the funeral home was packed. In 16 short years, Skylar touched and reached so many people and changed the lives of so many. The Disney Princess Half Marathon was around 2 weeks after Skylar passed and I knew I had to still do it. She was my coach for the run and she knew I always did it for her and her Rett sisters and brothers, and I could not stop keeping my promise to her. Skylar truly left an amazing legacy behind and that is my life’s goal now—to keep that legacy she left behind going, to keep her memory going, and to keep my promise to her to keep fighting and raising awareness for Rett Syndrome.
