My Daughter Estelle was born 25th August 2001, born  12 months earlier than planned, Estelle was to be the final piece of the jigsaw to complete the family with  my future wife Angela and our daughters Shannon, Siobhan and Chantelle.

It was going to be perfect....but sadly it wasn’t

Estelle grew and progressed as all little girls do in the first year of their lives, she showed amazing skills in mastering her early learning toys and spoke with a lovely soft voice, her very first word was ‘daddy’, little did we know that at just over one year old she would lose all the skills she had learnt, unable to understand what she once knew so well, she would never say daddy again, Angela has never heard Estelle call her mummy.

Estelle was diagnosed with Rett Syndrome at 5 years old, at the time there were no doctors specialising in Rett Syndrome, no support groups, no printed information and no access to other families of Rett girls, we felt helpless and alone not knowing what to expect or what the future may hold for our little girl, we were to remain alone for almost four years.

Reverse Rett was founded in 2010 by parents of Rett children, we literally ‘fell over’ a cycling event on the internet for this new charity that was raising money to fund research to find a cure for Rett Syndrome, and this is when we started to live life with hope for our daughter and many others like her.

Awalkforestelle is now in its third year, 2012 began with myself and 4 friends, Richard Graham, Andrew Aspinall, Mike Govier and Michael Scott setting out on a journey of the unknown, wondering whether it was even possible to walk the 127.25 miles of the Leeds & Liverpool canal in just 4 days, we found that it was possible but it was an extremely difficult challenge.

Then in 2013 it was to be another extraordinary year when the walk would grow to include myself and 9 friends, Kev Longworth, Andrew Aspinall, Mike Govier, Graydon Thatcher, Mark Clarkson, John Phelan, Stephen Waddilove, Ian Lamoureux & Rachel Pressley take on this very long and difficult challenge.

I can certainly say that the challenge was no easier knowing that I had accomplished it before, infact it piled on more pressure than the first walk, what if I couldn't finish it a second time? it was to be another extremely difficult challenge that saw many of us limp over the finish line with bandaged knees from the hard canal banking due to the recent heatwave, each walker has their own story to tell of this amazing journey we had embarked on.

I will be eternally grateful to everyone who really dug deep to achieve what can only be described as a victory as at times we felt we were fighting against the odds.

My view of our journey is summed up with a few sentences.

Both the 2012 & 2013 walks were much tougher than I or any of us had imagined, we had high points, low points, were tired, achy, sore and some of us even bled, it took two months for my feet to heal in 2012 and my knees have still not recovered completely from the 2013 walk, But the thought of seeing Estelle at the finish line in Leeds was so strong and spurred us all on, I couldn’t even imagine seeing her there without choking back tears and I know this year will be no different, yet as hard as it is going to be it can never be as hard as life is for Estelle and all Rett girls

I thank you all from the very bottom my heart for your support

Al

 

 

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