Here are some short videos that RSRT and Hope for Hannah have put together to raise awareness for Rett Syndrome. I’m not a natural optimist – yet as some sort of self-preservation mechanism, I have a little unspoken mantra – It’s OK. Edda’s OK. We’re OK. Everything is OK. And the thing is, it’s true. We are OK. But watching these little videos is hard – because, well, you know, Rett Syndrome is a pretty big downer.
Anyhow, here’s a shout out to my little brother – you didn’t donate yet this year – go to the side bar and pick out your favorite Rett charity and donate this year! It’s all tax deductible. 😛
I am not a natural optimist too. But, Edda will be fine. People around her will be fine too. Just do whatever one is doing.
Hi Doris! I spoke to the person that is running the trials and we are on the list to be interviewed to see if Claire will be a candidate! And to your post, Claire is perfect just the way she is,because she IS Claire.Edda is absolutely perfect Edda! We are so blessed to have such amazing human beings in our lives, teaching us so many wonderful things. I am rich because of her.
I'm so glad you got in touch with the clinical trial person – did they mention when the interviews were happening? What the timeline of the study was?