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!!

Tuesday, 19 November 2013

Daydreaming. Then back to reality....

Last week I was browsing through some of the many shopping catalogues which are sent out in the run-up to Christmas, and I saw the most amazing bunk bed which would have fitted perfectly in Jessica's room. I then spent several pointless minutes daydreaming about living in a non-Rett world where the two girls could share a room, and more than likely fight over who got the top bunk.

Later in the week, an Occupational Therapist from Social Services came round to assess Jessica and our house, and to see what changes we could do to make things easier for us. Well, from daydreaming about a pretty, shared girls' bedroom with bunk beds, I was brought back down to earth with a bump. Discussions about through-floor lifts, ceiling hoists, ripping out our only bath to make space for a wet room were all a bit depressing, to say the least.

We moved into our current house when Jessica was 9 months old. As that was over a year before her diagnosis, we had no idea of the secret she held inside. At the time we said we probably wouldn't want to stay in London indefinitely, and would probably look at leaving the city at some point in the future. But we found a lovely house, in the area that we wanted, and moved in and made it a home. Our home. We moved in, we re-did the bathroom immediately (as when we turned the taps on, the water ran through to the kitchen below) and made other improvements and additions, including Jessica's little sister! And here we are. Settled. We still love living here, have just got Jessica settled into an amazing school and do not feel ready to leave the area. We definitely do not feel in position to take on the challenge of deciding where we might want to be, and then trying to find our "Forever House" there. And our next home definitely needs to be our Forever House, due to the amount of work and money it is likely to need to make it suitable for Jessica in the future.

However, I am very concerned that we are going to be pushed into making some decisions long before we feel ready. Jessica is getting bigger and heavier, and carrying her up the stairs, lifting her off the floor, bathing, toileting etc. are all gradually becoming more of a challenge.

It is difficult to know what to do for the best- it is such a big decision, and we can't afford to get it wrong for many reasons. But we can't carry on with our current situation too much longer either, so burying our heads in the sand isn't an option. Unfortunately.

Wednesday, 13 November 2013

A happy half term

Well, we have survived another school holiday - mainly by going away as a family for the whole week, renting a cottage in the countryside.

There were presents to say well done for settling in at school so well:

Shopping to unpack:

Streams to paddle in:

Pumpkins to carve (Jessica chose the design!):

Ducks to feed:

Swings to go on:

Early morning crafting (neither girl made the most of the extra hour in bed that turning the clocks back gave us!):

Country walks (which Jessica loves):

Deserted beaches:

Lunches out:

And new favourite toys:
The Witch from Jessica's favourite book "Room on the Broom".

All in all, a good holiday.....

Friday, 8 November 2013

She CAN do it: eye gaze computers

Jessica has had a few trials now on eye gaze computers. The best way to explain this amazing concept is to imagine that you are using a computer, but instead of moving the cursor with your hand, you move it on the screen using your eyes. You can then "click" on something by holding your gaze on whatever you want to click on for a pre-determined length of time.

Jessica was amazing with this piece of equipment. I don't have any videos as I was just too stunned watching her to take any! Jessica showed that she thinks systematically and logically by how she approached the games and puzzles. She showed that she is strong-willed, understands instructions very clearly and has a sense of humour. I think I know Jessica quite well, but even I learnt so much about her, and what she is capable of in just a brief 30 minute session.


Just imagine if she had access to such a computer all the time...She could play games, use it to demonstrate her learning, experience some independence, control some of her environment, learn to communicate with us clearly - the list goes on and on. However, such technology does not come cheap. And while there are children in our borough who have been allocated eye-gaze computers, they are children who are very physically disabled, but don't have significant, or indeed any, learning difficulties. And no matter how much I say that Jessica is cognitively alert and able, or indeed her speech therapist does, it doesn't mean anything unless we can convince the budget-holders that she is able to use and benefit from such a device. And to be fair this is very reasonable. It is a  LOT of money to be allocated to one child.


However, this is where things get interesting. Rett Syndrome is relatively rare, and at best most professionals have only worked with a few girls with Rett Syndrome, if they have even heard of it at all. So I imagine most people end up Googling it. And most of the information around says that girls with Rett Syndrome have profound learning disabilities and are incapable of learning. But this is not necessarily true, as many parents of Rett girls have been saying for a long time. Girls with Rett Syndrome are trapped in their bodies, unable to express themselves
- they have no verbal voice, and limited physical ability, BUT what they do have is eye control, an irrepressible urge to be sociable and form relationships, and a definite ability to understand far more than they can easily express.

With the advent of technology such as eye-gaze computers, this is becoming more and more apparent, and the abilities of these girls are becoming clear. This is beginning to become more accepted, and articles are being published and research is being carried out.
Eye-gaze computers are the only way that these girls can access the world, learn and reach their potential.

We are therefore in a unique position when requesting this piece of equipment. Usually
, when requesting some level of support, equipment or service, you have to demonstrate how "bad" the child is, and why this resource is needed. We, in contrast, need to demonstrate how absolutely amazing Jessica is, and show that she is capable of using an eye-gaze computer to its maximum potential, and to show  just what a difference it could make to her life.  Wish us luck!!