Friday, July 18, 2014

Not "if", but "when"

Ever since our first appointment with Dr. Sasha two years ago, I have been always on the verge of writing a post about the possibility of a cure for a Rett Syndrome, since she says there will be one. Currently at the Rett Center that Dr. Sasha is the director of, she is running a trial for medications called statins, or cholesterol medications.  She has included only older girls, and only girls who could walk in the first wave.  She explained to us in the spring that by using girls who can walk, she is able to see results more quickly than with girls who are not currently ambulatory.  This past week, another Rett mom shared a link to a video with me of Dr. Sasha giving a speech at a fundraising event recently.  She thanked all of the supporters that have donated and raised funds over the years and she said she was happy that she finally had something to report.  I'm going to include quotes from her speech here, but I will also include a link to my Understanding Lu Facebook page where I posted the video for anyone that would like to see the whole video. I encourage everyone who can to do so!

Here are quotes of Dr. Sasha's: 

"Just like every other doctor and scientist, I do know the cure is on it's way.  We have very solid, robust evidence.  So, we replace the question 'if' with the question 'when'." 

 "Many of the girls who were treated can walk and run up stairs for the first time in their lives."

"Some of the girls who were treated speak words again."

And here is an article with more detailed information on the statins and why they may help:

So, a medication is helping girls walk better and speak again.  I literally nearly had a panic attack when I heard Dr. Sasha speak the words I have quoted above.  I was instantly bawling. I imagine a panic attack might seem like a confusing reaction, and quite frankly it is, and it is why I have always hesitated to write much about my feelings about a cure.  I want it just as heart-wrenchingly, desperately as every other parent with a daughter with Rett, there is no doubt about that.  What throws me into a panic is how quickly my hopes soar higher than you can imagine, and I am terrified of getting my hopes up. It's like a kite that the wind takes away from you and you are afraid that you are going to lose it before you can get it reeled back in again. There are so many, many people that I have encountered virtually and in real life who just go ahead and expect a cure to come, maybe even depend on it as a future reality.  Everybody has their own ways of viewing things and dealing with life, but mine is to expect that Lucy will have Rett Syndrome for the foreseeable future and to work unceasingly to figure out how to make that future as functional, healthy, and happy as possible for her.  And then, if or when a cure becomes part of our reality someday, she will be as ready as she can be to learn how to do things that might then be possible for her, like walking independently and talking, that she just can't manage right now.  

I also feel like it is a delicate situation wherein I want Lu to understand that we want her to be healthy and to not have the struggles that she has, so that she may be able to have a full life some day, but I do not want her to think that she isn't good enough as she is and that all I want is to change her.  She is amazing...I've said that a jillion times...just how she is.  However, I would do anything for her to be able to breath regularly, to use her hands, to walk, to talk, and to eat and drink without choking. But, if she never can, we will love her just the same.  The world won't end.  It already did for a second on February 27, 2012 when we got her diagnosis, but it started again.

I am vehemently against denial, especially when it has come to Lucy and Rett Syndrome.  It is what it is, and I don't let myself or anyone else in Lucy's life hide from her reality.  I guess maybe I sometimes feel as if simply assuming there will be a cure is a form of denial in that if you just believe Rett Syndrome will go away someday, then you don't have to feel as worried about it right now.  But there is no guarantee at this point.  Not even those miraculous words from Dr. Sasha make it a guarantee in my mind because something may still go wrong.  They might discover that it actually can't be cured.  I don't know what will happen and that is why I am so adamant that Lucy be kept healthy, and educated, so either way the question of a cure goes, she will be fine. I still just can't bring myself to say "When there is a cure." I just can't. If there is one someday, and if it works, then I will let myself believe it whole-heartedly.  For now, I will just wait and see.  

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