Note: This little girl passed away in mid 2012 🙁
So if you haven’t yet seen the clip of Rett Syndrome being featured on The View this week, here it is:
I was so proud (and very tearful) to see RS gaining national attention in the U.S. For a couple reasons:
- Research is only funded through private donations. There is no government or drug company funding because they only fund research when it’s nearly complete and, therefore, successful and profitable for drug companies. So we need all the publicity we can get.
- Monica Coenraads was a guest on the show, talking about the nearness of a cure. She’s the president of the RSRT and they are the main supporters for Rett Research. If you’re going to give money, give it to the RSRT! And if you’re in the UK, the counterpart is RSRT-UK.
- They didn’t mention it on the air, but all of the studio audience got a copy of the newly released Rett: The Documentary which tells the story of three families with very different girls all struggling with Rett. It’s heavy, but light and surprisingly uplifting. And it has pictures of Grace on it!
So what did I think personally? I think someone should teach Whoopi some math. RS isn’t ‘one in a trillion’. That would mean that RS doesn’t even exist! :*) But I think the ladies were great, asked great questions and the guests (the Gutierrez family) were so brave. I love that they pointed out that our girls are prisoners in their own bodies and that they know everything going on around them. They described how Stephanie can lift her leg on command and that’s the exact scenario in which we discovered that Grace is ‘in there’ and can understand us. We can give her many different commands which she can carry out. She flirts, acts silly and even ‘tells jokes’ as we put it.
I think Monica was eloquent and explained the situation with research very well given the very short amount of time she had to speak. “It’s not a matter of if, it’s a matter of how”.
Rett Syndrome is not incurable. The cure is coming.