Julie Grace was born a 5 lb 11 oz healthy baby girl. She was deemed the “good baby” by her two oldest sisters as her twin sister, Jerri Noel, was the more demanding of the two. Julie smiled and cooed and seemed good with the world. She was always the calmer of the two and would wait until Jerri had been fed for her bottle. She slept through the night early on and took great naps. 

Julie met all her milestones the first year. We always commented on how she would be our little intellectual since she spoke first. Jerri excelled in physical activities while Julie spoke 5-6 words by her first birthday and “read” her books, flipping the pages over and over. She never crawled but scooted on her hiney everywhere. She never pulled to stand and even seemed for a time to be afraid to reach anything over her head. Shortly after her first birthday she lost her words. We thought it was a phase and were told to wait until 18 months or even longer before we became worried. We were already worried. We have 3 other children and we knew something was wrong with our Julie. 

At 18 months we pushed to begin testing. Countless tests began as well as hours of therapies for what was deemed a developmental delay. A neurologist even labeled her “stubborn and content” in his charts and told us she would walk when she was ready. 

Julie was irritable. She began screaming spells at night and wasn’t sleeping well. It was recommended she be referred to behavioral health at Children’s Hospital. In the spring of 2013, I received a call from her pediatrician’s office that her young Physical Therapist had seen signs of Rett Syndrome and suggested genetic testing. We are now very grateful for this therapist because about six weeks after the testing I received the call at work that she had tested positive for the MECP2 gene mutation. On May 9, 2013, Julie received her clinical diagnosis from Dr. Alan Percy. 

Julie Grace was still able to scoot around on her hiney and self-feed finger foods up until the spring of 2014.  Around this time we took the big step to enroll her in a special needs early learning program an hour away from home three days a week. She is also enrolled locally in the city school system two mornings a week. In these settings she receives the best therapies we can currently provide and more love than we could ever imagine. She is learning to communicate with us via her Tobii eye-gaze device and her personality has blossomed into such a funny little girl so full of life. She now has a wheelchair for most of her transportation needs.  Recently she has also tested for (and blew it away I might add!!!) a special walker that will allow her access to a whole new world. 

Our weeks are now filled with therapy appointments and our days are filled with prayer; both that we can keep her as happy and healthy as she is now and that there will be a cure in her lifetime. We know that there is a long road ahead of Julie. But she has countless people praying for her and helping her along this journey. As so many have said, ‘Rett syndrome is a journey rather than a destination.’



of hope