The Diagnosis

We realized around six months that she was not developing her milestones like she should. We were sent to countless doctors for many tests all with no results. She started PT and OT at nine months old. Finally someone referred us to a geneticist. He examined her, listened to her history and symptoms and told us he thought she had Rett Syndrome. We had never heard of it. He took some blood and sent it for testing. We went home and researched Rett, and realized that the symptoms sounded just like Saras and we just knew that is what she had. Right after she turned two, he confirmed that she did indeed have Rett. We were told what to expect, what not to expect, told her life expectancy could be really short, that she would struggle, there was no cure. Take each symptom as it came.

We were devastated at first. Our child looked so normal, so perfect, such a sweet loving child. Why did this fluke happen to her? Why is there no cure, no way to help her? Then I realized that for some reason God made her that way and had to deal with it. So we did everything we were supposed to do, and took each day and treated each problem as it came. I choose to treat her as if her life expectancy would be just as long as anyone elses, not dwell on what could happen.