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.

1 thought on “Shona’s Digestive Pain Was Just One of Many Symptoms of Rett Syndrome”

  1. Debi says:

    Shona is now 8 and she is a very outgoing wee girl. Smiling laughing happy. She has a tube in her tummy to make sure she takes all her medication as she developed epilepsy and Rett seizures which can be scary ! She is also doing fantasticly well on her Tobii . Using eye gaze to choose and play. Shona is now listening to books such as roald Dahl willy wonka ! She has shown an interested in words and numbers. I just want a cure for my little star so she can talk to me and we can see her have an independent life.

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