Hi! My name is Karley and I have a condition known as Rett Syndrome. I just turned 8 years old on August 5th. At 15 months old I had nearly 50 words in my vocabulary that I used daily. Slowly I began to lose these words and by the age of two I was no longer talking, I just began walking on my own, seizure like activity began, I had repetitive hand movements and I didn’t like crowded places or loud noises. I was given a diagnosis of Autism in 2006 but my parents knew that there was something more that was going on. After a lot of research and going to the children’s hospital, a blood test showed that I did have Rett Syndrome. But my parents refused to let that define me. I enjoy playing in water, picking on and cuddling my brothers, going to school and I especially love anything that has to do with being outside.
When our daughter was diagnosed, right away the worst case scenario came into play. Will she loose her ability to walk? Will she lose the ability to use her hands? Scoliosis? Sudden death? These are fears that we as parents of our angels face daily. But you choose to look beyond the diagnosis, and you see the beautiful miracle you have been given. Every day with our daughter is a miracle. You learn not to take the littlest things for granted. Hearing your child’s voice,running, feeding herself, these are some things that seem so mundane to everyone else, but the most cherished to parents of children with Rett.
We strive to give Karley the most normal childhood that she can have, doing things that a child her age enjoys and just living in the moment! It is because of the community and family support that we ARE getting closer to a cure, and we just want to say THANK YOU from the bottom ofour hearts!
“Hope is the thing with feathers that perches in the soul. And sings the tune without the words, and never stops at all” ~ Emily Dickinson.