Awareness for Rett

The video’s been shared a lot, so thank you for that. It’s at 110,000 views and it’s been pretty cool to see.  (If you haven’t seen it yet – http://bit.ly/Magnoliashope.)  I do wish we didn’t have to share it. I wish it was already a household name and already had significant funding. For example, I had heard of a disease like tay-sachs my entire life and that affects something like 1 in 350,000. That’s a stat from wikipedia which is why it has the “something like” qualifier. But it’s just interesting to put it into perspective. Rett affects 1 in 10,000 female births. And yet, no one knows about it. So, any awareness is important and necessary and gets us closer to that cure we’re fighting so hard for. Just look at the ALS challenge – those videos which started out as awareness have resulted in millions of dollars of gains.

The news is doing a story about the video we put up and Rett Syndrome. Today was the interview. Jenny’s a little upset she had to cry on TV, but that’s the producer in her, just making for good tv. Plus the interviewer was really trying to get it out of us. I almost lost it too, but Jenny’s phone rang, just in the knick of time. I’ll let you know when it airs, probably in a few weeks and it will be a nice little piece of awareness. I’m glad to be shining the light on this thing a little bit. It makes me feel like we’re really doing some good for the cause. They asked me to find some videos of her talking, though, so I stayed up late watching old videos. It’s really hard to see where she was – she was walking (which she still is), and playing with both hands (which she no longer can), and even talking (which she’s not doing anymore). She was doing handstands, her balance was much better. She was even squatting. One of the last videos we have of her talking ends with her saying “bye dad.” She’s come along way from there. And it’s hard to see. It’s even harder to realize I was at work the entire time and I missed so many of those moments. One of those things where hindsight is 20/20 – I wish I had savored each and every one of those moments just a little bit more.

But then we have days like this, where she giggles and plays and jumps with so much joy, and as bad as Rett is, I know it can’t take things like this away from me.

The only thing that can shake her smile is a hug from a smelly dog

The only thing that can shake her smile is a hug from a smelly dog

I don’t think Jenny or I realized how emotional sharing the video actually would be. It’s really the first time I’ve talked about it in a public forum (except this blog which is still really a private forum) and the outpouring of response from the video has been emotional. I’ve heard from friends I haven’t heard from in years. We’ve connected with people we’ve never met. Someone sent me subtitles for the video in Portuguese and someone else sent German subtitles – so people could understand the video in those countries. And it’s been cathartic for me. I feel like I’ve been keeping this major secret from everyone who isn’t following this blog. And it’s nice I can talk freely about it now. I’m glad the video let me do that. And now that I can talk freely, I think the world is about to get a lot more aware of Rett Syndrome.

Note:
Thank you for following along with this blog. I’ll probably post one more time about the news story and the video, unless something drastic changes – it’s doing it’s thing at this point and I’m sure people will continue to share it, but I’d like to get back to writing about all the progress she’s made. Thanks for all your support in this. It means a lot. And thanks for continuing to share the video. It’s working.

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