Rett Syndrome, the saga continues

You are never going to believe what happened today. I woke up and sure enough, Claire still has Rett Syndrome, drat! She even did her shaking stop breathing thing just as I cuddled up to her this morning, just in case I had any doubt. Then she was fine. She ate well and played with Chloe. As we left to go to kid quest she was all smiles and was happy to show off her new shoes and how well she walks in them. Her days are really full of so much good stuff right now. She is making lots of friends at school and learning a lot. 1st grade is so much more challenging that kindergarten was and that has really helped her to come alive, the girl loves to learn new stuff. This week in pt she did a quarter mile on the treadmill in just under 15 minutes, a new personal best! I could go on and on about the mounds of small meaningful things but I think you get my point, she is doing well. Earlier this year that was definitely not the case so I am really enjoying this season of everything going well. At the same time we have friends that are having new challenges thanks to rett. While it is nice to know that you are not alone it is heartbreaking to know the pain that somebody else is in since you were just there. I would never wish any of this on anyone, but these people are my friends (you know who you are) and I hate the thought of their hearts sinking as they are just trying to do the normal simple things in life and can’t. So, to those of you reading this, strangers and friends, I want to remind you that there is hope. It is often so easy to forget, but it is there. There has never been more going for research in Rett syndrome than there is now. That is why we are going up to Oakland next weekend. To meet with doctors that are trying to figure this blasted thing out and also to help to raise the vital funds to support the research that the girls so desperately need. In the chance that you are reading this and don’t fall into the category of somebody struggling to fight Rett Syndrome daily, please consider supporting Team Claire by clicking here. To the rest of you, YOU CAN DO IT!

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