7.02.2010

I Love Lab Rats

I remember that when I was young, kids would have pets like hamsters and gerbiles. I must admit I never got it, I didn't see them as cute and still haven't the foggiest as to why you would want them for a pet. In junior high I kept the class snake for a summer and got to feed it live rats, which honestly never bothered me, in fact it was a very interesting process. It has been a long time since I have even thought of such little things. Then in 2007 the world as I knew it blew up when Claire started to regress and was diagnosed with Rett Syndrome(RTT). As I scoured the internet, I found that there was a study that was just finished. Doctors were able to reverse RTT in mice. That was three years ago. Since then Claire has lost the ability to feed herself, hold a cup, to crawl and is unsteady while sitting and often just falls over without warning. Yesterday I had the honor of having one of the clinical doctors that works with Rett research and many of our girls in our home. She was telling me about how the day before that she was in the mouse lab at Georgetown where amazing things are happening. They gave the mice RTT and then an enriched environment and levels of BDNF went up. It is that simple, girls with RTT need more BDNF in their brains and you can get it by working with them. Here is the really super-dee-duper cool part about that. Researchers are working on a cure and it looks like we are about 5 years away. I have to keep pushing and fighting for Claire to get everything that she can in the way of access to therapy and life so that in a few years, when other mouse models all come together and there is a cure, we are ready to get up and dance and Claire will know that we believed in her. In the mean time you have a few different options of how you can help. 1. You send me a check for hydrotherapy so I can work with her in water and hippotherapy so that she can work with a horse to help her body move. 2. You sign on to facebook and vote once for the Chase Community Giving campaign for Girl Power 2 Cure by July 12th. 3. You can vote once every day the whole month of July in the Pepsi Good Idea campaign for Turn Research into Reality. Wow, look at that, I even have link right there on the side of this page. You can click on them and it will take you right to what you need to do. Honestly, I don't expect that anybody would send money because pretty much everyone I know barely has enough for their own needs, and I am alright with that. But really, who doesn't have an extra minute to vote online. I promise that even if you have to wait because the serve is slow or there is some type of technical error, it is way easier than using a computer with eye gaze to talk or sitting and staring at a cup of water when you are thirsty, hoping that somebody will notice. Thank you very much for your help and support. I look forward to the day that we can have a giant party and Claire will be able to get up and dance with, it just isn't going to happen if we don't fight for it.

3 comments:

Erica said...

im so LUCKY to have you in my life. period.

Kelly said...

Wouldnt it be so awesome to have Rett Syndrome win both!! I love that we are fighting for our girls together - and I can't wait to be dancing with our angels!!! Hugs from Indiana!!

The MacDonald Family said...

Wonderful Post! Yes, I'm already planning the party for 5 years from now! And saving for our plane tickets so Annie and Claire can dance and sing together!! Hugs!