Living with Rett's Syndrome: Family is Everything

We continue to learn new things about Aubrey every day. We now know a little more about Rett's Syndrome. This is a rare genetic disease that affects about 1 in 10,000-15,000 girls. It is caused by a mutation in the methyl CpG binding protein 2, which is responsible for brain development. So, a girl with Rett's Syndrome has a malfunction with this gene that helps her brain grow. There is also no cure for this disease yet. Aubrey's doctors are working the best they can to help her. So far they have given her glasses to help with her vision. Soon, she will get braces to support her legs. She is also visiting with a speech therapist to try to develop a sense of communication. Other occupational therapists come to her house to try and build up motor movements. Despite all of the therapy, Aubrey still tends to be a pleasant, happy little girl.

The past months have been difficult for my family and I, but we are coping together. We have spent the weekends together at my grandma's house to try and lift up Ashley's spirits. I have never seen someone so sad before; I feel terrible for her. I wish there was something that I could do to help her, but I think that having our family together all the time is helping her the most. It would be even worse to go through something like this alone, so it has never been so important to bring the family together. It's the times like these that make me realize how blessed I am to have my family in my life. We surely will not give up on Aubrey, we know she will be able to fight through this.