If you know me, or my family, at all, then you've heard everything that I could possibly write here many, many times before. You already know that Rett Syndrome is a devastatingly cruel, debilitating condition which stole my daughter's voice when she was eighteen months old and has been systematically stealing skills from her ever since. You already know that Hannah's mobility, hand function and breathing have deteriorated significantly over the last three years, that she has recently started to have up to 60 partial seizures a day and that she now needs a splint to keep her right leg strong and straight. You already know that she is imminently changing schools because the school she loves can no longer provide the kind of facilities and expertise she needs. You already know that the two year old who could climb on tables, turn the pages of a book and babble along to her toy dolls, has faded away. You already know that, despite having stolen all of this from a 6 year old, Rett Syndrome will not stop there. 

  But, if you know me or my family at all, you also already know a few other, brighter, things. You already know that Hannah has a mischeivous smile and a wicked giggle which enchant most who meet her. You already know that her eyes sparkle, telling us that she understands far more than she can express and that she knows the world has more to give her. You already know that giving Hannah more, giving her a future, is something we will all continue to fight for, because you also already know that the cure is within reach. Raising funds for research is the only way we're going to get there.

  So, although you already know that life in the Johnsson household is a tad busy and that finding an hour every day for 50 days to go for a walk (let's not be unrealistic here, there will be no running) is going to be almost as tough as the actual physical walking, you can be sure that I WILL do it. Hannah will keep me going, of course, but watching you lovely people push the pennies up will help marvellous much too :-)

THANK YOU XXX

http://blogs.independent.co.uk/author/beth-johnsson/

www.reverserett.org.uk