Rett Syndrome
At just 4 years old, Julie Grace Carroll of Pell City has gathered an army of supporters. Julie’s Army of Hope is the name Julie’s parents, David and Melanie, have coined for the family, friends and community members who have rallied after learning of Julie’s diagnosis with Rett syndrome, a neurodevelopmental disorder that causes problems in brain function, especially those responsible for cognitive, sensory, emotional, motor and autonomic functions. Julie Grace and her twin sister, Jerri Noel, were born on Feb. 3, 2011. From all appearances, Julie was a healthy and happy baby girl. Her older sisters referred to her as “the good baby” because of her sweet and sunny disposition. “Julie met all of her milestones during that first year,” David said. “We have a video of her at her first birthday saying, ‘Dada,’ ‘Mama’ and ‘Mickey,’ for Mickey Mouse.” Soon after that first birthday, though, Julie Grace stopped talking and seemed to be losing other skills. While doctors urged patience, indicating that it might be a passing phase or a behavioral issue, the Carrolls grew increasingly concerned. “We knew something wasn’t right. We had no idea what, but something,” David said. Julie Grace’s symptoms worsened. She became irritable, was unable to sleep and often screamed through the night. She was referred to Children’s of Alabama for behavioral therapy. Genetic testing confirmed that Julie Grace had a gene abnormality associated with Rett syndrome and in May 2013, pediatric neurologist and Rett’s specialist Alan Percy, M.D., made the clinical diagnosis. Caused by a mutation of the X chromosome, Rett syndrome occurs most often in girls. Symptoms appear after a period of seemingly normal development, usually at 6 to 18 months of age, and are followed by a regression during which patients lose communication skills and purposeful use of their hands. Julie Grace sees Dr. Percy every six months and attends a special needs early learning program several days a week and special education classes through the Pell City school system to help her learn to communicate by moving her head or adjusting her gaze. She is also learning to use eye movements to direct the cursor of a special computer. As she masters those skills and her vocabulary develops, David said, her ability to interact will increase. “Julie Grace hears everything and understands everything. She’s just as smart as any child; she just can’t get it out.” David said they have been surrounded by support from Julie’s Army of Hope which is helping the Carrolls increase awareness of Rett Syndrome and raise funds for research. Fundraising efforts have included local community and school events and, most recently, the Hike for Julie. In June 2015, family friends Henry Fisher and his son Bennett began a five-month hike along the entire length of the Appalachian Trail in Julie’s honor. With supporters making pledges for each of the 2,189 miles they walked, the duo completed the hike in December with more than $20,000 for Rett Syndrome research. David is confident that the research Julie’s Army is helping to fund will pay off. “One day there is going to be a cure,” Carroll said.
