Tuesday, 26 November 2013

The Clever People

Sometimes, usually at night, Jessica will just sob. It is not a cry of pain, or of fear (like when she is having one of her night terrors or possible seizure episodes). It sounds more like a sob of despair. And clearly I have absolutely no idea what is bothering her. However, I do wonder if she is upset about all the things she has to put up with. About having Rett Syndrome. And to be fair to her, I am amazed that she doesn't get more upset or frustrated more often.

When Jess is upset like this, I climb into bed with her, and we curl up together and I tell her about The Clever People. The Clever People are the scientists working around the world to find treatment and "The Cure" for Rett Syndrome, and those who work for Reverse Rett in the UK and RSRT in the US.

The research into treatments for Rett Syndrome (including ground-breaking gene therapy) is progressing at an amazing speed, and is currently purely funded by donations and money raised by Reverse Rett and RSRT. Scientists believe that Rett Syndrome may be the first curable brain disorder, which could also lead to huge progress in the treatment of other conditions such as Alzheimer’s disease, Parkinson’s disease and autism. Pharmacuetical companies are beginning to take notice, which is amazing, as it means that the current research is looking VERY viable, and that they may begin to provide funding in the future for research and clinical trials, speeding up the process even more.

So I tell Jessica all about The Clever People, and how they are trying so hard to make her better, and that it WILL happen, but that we have to be patient. I promise her that one day she WILL be able to talk to us, either because "The Cure" has been found, or because she will have an eye-gaze computer. And Jessica does calm down. I have no idea if, or what, she understands but when she is upset like this, hearing about The Clever People seems to reassure her.

Of course I want a cure for her. More than anything. I want her to live her life as she should, I want all the medical complications that are causing her pain and suffering to be taken away. And I want to get to know her - what she is thinking, feeling. So it goes without saying that I hope for The Cure.  And I truly do believe that one day it will exist- but the big question is when? In Jessica's lifetime? In my lifetime, so I am able to get to know her as I wish to? In her grandparents’ lifetime?


I don't live my live by the motto "when there is a cure...." It feels far too distant to make a significant difference to our day to day lives, and I feel like I am would be setting myself up for a fall by getting over-excited by something so uncertain and possibly so far in the future.  All we can  do is live our life the best we can, in the present.

However, last week I was talking to someone who was unfamiliar with Rett Syndrome and was explaining about all the research that is going on. They responded in amazement, and said "Wow, just imagine, Jessica's life could be completely unrecognisable in 10 years time".  And I had to admit that, yes, this is a distinct possibility and it stopped me in my tracks, trying to imagine what "The Cure" might look like. And then, I read the Annual Report from Reverse Rett Research Trust. This details all the current research into finding a cure for Rett Syndrome, and all the approaches being taken to alleviate some of the symptoms. It is amazing and all tantalising close, and yet so far away at the same time. 

But dare I say it, I might be a getting a little bit excited.....  come on The Clever People!!


3 comments:

  1. Absolutely! I agree - I don't spend my days waiting for a cure, but I do believe wholeheartedly in supporting the truly groundbreaking research that's going on. It's exciting, and it helps give meaning to all that our girls go through.

    ReplyDelete
  2. hi, one of my friend's daughter has just been diagnosed of Rett's - so was looking around about the condition when came across your blog. Thank you for sharing and I hope and pray the 'clever people' come up with a cure soon.

    ReplyDelete
    Replies
    1. Hi, thank you for commenting, I hope you found the blog useful. If there is anything I can help you or your friend with, please don't hesitate to get in contact. All the best to you, your friends, their daughter and family. Liz x

      Delete

Thank you for leaving a comment and making my day!