http://www.youtube.com/user/rettuk25

We've done it! Admittedly not the most epic task ever - 5K around a beautiful park in the sunshine is not all that arduous I guess,  but we are still incredibly proud to have been there for Hannah and for Rett and hope that our total keeps on creeping up . . .

If you know Hannah, the chances are you probably already know at least a little about Rett syndrome. For the uninitiated however, here is a brief blurb . . .

Imagine the symptoms of autism, cerebral palsy, Parkinson's, epilepsy, and anxiety disorders…all in one little girl. That's Rett.

Rett syndrome is a neurological disorder which affects around 1 in 15000 girls (and very few boys). Genetic, but not hereditary, it can occur in any girl at any time. Although it is not widely known about, it is the leading genetic cause of severe disability amongst females and causes sufferers to be totally reliant on others for support throughout their lives. The syndrome is present at birth but is not usually detected until around 18 months, when the little girl's development begins to slow down. A period of regression will usually occur somewhere between the ages of 18 months and 5 years, when girls will lose acquired skills which will then not return. Typically, girls with Rett will be unable to speak, have limited or no mobility, have limited or no purposeful hand function and suffer with complications such as epilepsy, chronic spinal curvature and breathing and feeding difficulties. All these symptoms are accompanied by high levels of frustration and anxiety which lead to severe behavioural difficulties.

That's the bad news. The good news is, it is curable.  Rett syndrome has already been demonstrated to be reversible in the lab, the challenge now is to make it reversible in our girls. Rett Syndrome Research Trust is the only charity working solely towards finding a cure and is a driving force behind the science which will achieve that goal.

Hannah was diagnosed on 3rd February 2010, shortly before she turned 3. Until about 8 months previously, she had been an absolutely normal little girl, developing as all children do and showing the potential for the kind of future every parent wishes for their child. And then things changed.  We, as a family, live in the hope that one day Hannah will have access to a miracle and that Rett syndrome will become a nightmare that no parents ever have to go through.

 Every little helps, as the catchphrase goes, and we truly appreciate every penny you can donate towards RSRT and the work they do. We also truly appreciate your help in raising awareness of Rett syndrome as this is a huge part of the road towards a cure, so please do pass this on to your friends and family and let them know they can really make a difference.

Thank you.