Beth Johnsson
5x50 for Hannah
Fundraising for Reverse Rett
Story
The chances are you've read all of this before, you know our story, you most likely know Hannah. You may well have donated before, maybe numerous times. Thank you. Thank you for sticking with us, for still caring, for sharing our hope and certainty that there is a better, brighter future waiting for Hannah, and for helping to make that future a reality.
Even if you have read it all before, and especially if you haven't, please take a few moments to read again; it might feel like old news, like something we should have come to accept; but to Hannah, to us, and to every person battling with Rett Syndrome, it feels new and raw and painful and we do not accept it.
We do not accept something which can be changed. Rett Syndrome has been proven to be reversible, and its numerous symptoms can increasingly be managed better and/or treated.
In the past decade Reverse Rett has funded research which has significantly impacted treatment pathways and clinical provision for those with Rett Syndrome. Three UK clinical trials have been/are being undertaken and the World's First Centre for Personalised Medicine in Rett Syndrome has been launched in London.
Ten years ago, when Reverse Rett was founded, Hannah was 2 years old. Although her development was delayed and we were awaiting the results of her genetic testing, she was essentially a healthy, happy little girl who was developing a little slower than her peer group.
She could walk, talk a little, climb on to tables, feed herself, turn the pages of a book, play with toys, breathe normally and hug me.
Her diagnosis on 3rd February 2010 was a devastating blow and a shock, but nothing like as devastating or shocking as the gradual deterioration of her skills has been, and continues to be, since that day.
We are a decade on; Hannah can barely weight bear, has no words except 'mummy', has not enough hand function to turn book pages or focus to enjoy toys, her breathing is irregular and laboured, she has epilepsy, scoliosis and borderline Long QT Syndrome, and she cannot hug me.
But we are also a decade on in terms of research, and the hope that was a desperate fantasy back then is now a tangible reality.
This progress has been made possible by ordinary people - families, friends and communities who love someone with Rett Syndrome, stepping up. Marathons, mountain climbs, Muftis, bike rides, balls, parties, park runs, fetes, discos, swims, sales, songs, silences . . .these have made the difference.
The 5x50 Challenge isn't easy to fit in to busy lives, but nothing is easy for Hannah, not even breathing. So I will walk every day, be thankful that I can, be inspired by the bravest and most amazing girl I know, and be deeply grateful for every single £ of sponsorship which comes in.
Thank you.
https://www.reverserett.org.uk/https://rettsyndromeandmeuncut.wordpress.com/