Our beautiful boy Josh was taken from us just over a year ago on 27th April 2016. He was the bravest, most courageous soul I have ever known and I have wanted for a long time to do something to honour his memory and raise money for the Barth Syndrome Trust.

Josh was born on February 23rd 2015 and filled my life and the lives of his Mam, Claire and older brother, Jamie, with unbridled joy and happiness, from the moment he arrived to the moment he left us. Josh was born with Barth Syndrome. Barth syndrome is a rare, often life-threatening genetic disorder that affects boys. Most Barth boys have heart failure and a risk of sudden cardiac arrest.  However Barth also encompasses many other symptoms – immune system problems, muscle weakness, extreme and debilitating fatigue, growth delay and feeding problems.

Josh spent a significant part of his short life in hospital, but we did have our son at home with us for a wonderful, yet far too short, time. During this time at home he was given medication which helped him develop into a smiley, cheeky, beautiful little boy. To look at Josh during this time you would not have known he was poorly as he was thriving.

Unfortunately Barth has multiple symptoms, all of which can be life threatening to those with the disorder. After 8 happy months at home Josh was readmitted to hospital and sadly; heartbreakingly, didn't return. He fought so hard, for so long, and always will remain an inspiration to me, to Claire and most importantly to the proudest big brother you could ever wish to know, our amazing Jamie.

Josh is our superhero. He deserves to remembered and honoured and that is what I hope to achieve with this charity walk. I decided on a walk as during the hardest, darkest times of the last year, walking has helped me immeasurably. I have wanted to do a challenge like this for a while and the success of a previous fundraising attempt for another important charity to us, convinced me to go full steam ahead. I will be walking with my best mate Christopher Cox, who's support and love has constantly gone above and beyond what was expected and who immediately said yes when I floated this idea.

Please, please, if you can, donate. This money will make a huge difference to families currently living with Barth Syndrome and those yet to experience it. More details on the work the Barth Syndrome Trust can be found on their website

http://www.barthsyndrome.org.uk/index.php

I will be trying to post updates reasonably regularly on my training and challenges to overcome as well as a blog on the walk itself.

From Coxy and I, Claire and most importantly my boys, thank you from the bottom of my heart xxxxx