Shona was diagnosed at two years of age with Rett Syndrome. Rett syndrome is a disorder of the nervous system that leads to developmental reversals, especially in the areas of expressive language and hand use. Rett syndrome occurs almost exclusively in girls and may be misdiagnosed as autism or cerebral palsy.
As a baby, Shona was perfect. We had no worries. By eight months, she was behind, but we were still not all that worried. She sat up and played with her toys, she started to feed herself finger food and drank from her cup. She babbled and spoke the occasional baby word.
At one year of age, Shona was constantly suffering from cold and chest infections, and she seemed unhappy and cried in pain. We worried about her when she started to fall back in her developmental milestones and not use her hands. She withdrew from us and was trapped in her own world of digestive pain and nobody could comfort her. She lost her speech, hand use and mobility. It took a long time to get her balance right and make her comfortable.
With the correct equipment, medicines and diet care, Shona has transformed into a healthy happy girl. She is five years old and has begun to attend an additional needs school, which she loves. She cannot walk, speak or use her hands, but we hope she may be able to use eye-gaze technology to communicate.