Sophie is a delightful fifteen year old girl who loves hanging with her teenage friends, doing typical girl stuff like: hair, makeup, nails, watching videos on Youtube (mostly of boy bands) and recently she started baking with her mom. Sophie loves to eat. She also loves to hear stories and read them, and be with her family. The obstacles that Rett Syndrome presents require assistance in every aspect of life. Like most girls with Rett Syndrome, Sophie is non-verbal. She has limited use of her hands and motor planning is quite difficult. The severe scoliosis that has advanced as Sophie has come into adolescence increases the challenges of motor planning. Sophie’s weeks are filled with therapies that improve her ability to be in the world, but simultaneously they interfere with time that could be spent just being a teenage girl. Sophie has been actively learning to use the Prentke Romich Eco 2 with Eco Point, an eye gaze speech generating device. Sophie tested the PRC device first with a 15 Unity Sequenced language, but we quickly moved her to a 60 Unity Sequenced language. In this past year Sophie has amazed us by demonstrating her comprehension of what is spoken around her and her ability to connect with family, friends, therapists, doctors, teachers and even strangers. Her comments are witty, intelligent, perceptive and insightful. Sophie’s parents are keenly aware that the support of the Rocky Mountain Rett Association increases their likelihood of finding and using strategies and augmentative devices that allow their special girl to SHINE in the world.
Help Girls like Sophie SHINE and their inspiration will change the world!
To contact Cathy Shorma (mom of Sophie) you can e-mail her at firstname.lastname@example.org.