
I recognize that without living through the myriad of symptoms that Rett causes, it’s hard to really picture what these symptoms are like. Not being able to use your hands, for example, does not seem as horribly disabling as it is. Continue Reading
They thought they would teach their daughter about the world Instead they have to teach the world about their daughter
I recognize that without living through the myriad of symptoms that Rett causes, it’s hard to really picture what these symptoms are like. Not being able to use your hands, for example, does not seem as horribly disabling as it is. Continue Reading
A very common statement said to me is, “I don’t know how you do it”. I usually don’t know how to respond other than smile and change the subject. Truth is, there are days that life is spinning out of Continue Reading
We have been told numerous times, “We are so close to a cure.We are so close to treatment for Rett.” We have had so much hope for a cure, but even a treatment, something to abate one of her symptoms Continue Reading
I’ve learned a lot of things the past few years dealing with Rett Syndrome. First, every time I write Rett, it gets auto corrected to Rest, which is hilarious. I wish she had Rest Syndrome A syndrome where everyone is Continue Reading
Last week Jenny wrote about her birthday and the mixed emotions that come with it. This week, I wanted to share a little more detail about that. 5 is an important year for a lot of reasons. In my family Continue Reading
Rett is a progressive disorder – it will get worse and worse until there is a cure. In other words, we are never out of the woods. Every girl’s Rett syndrome is different. These were Maggie’s Rett symptoms last year. Continue Reading