Just over 14 years ago I met Emma at an ante-natal class. Fast forward a couple of years and our children, Hakan and Scott were buddies at nursery, were playing out together on the back street, and starting a friendship that remains strong to this day. Fast forward again to the heart wrenching phone call in which Emma told me that Scott had been diagnosed with Duchenne Muscular Dystrophy, as Emma explained that Duchenne is a life-limiting disease, which is 100% fatal, for which there is no cure, a relentless progressive muscle wasting condition that ultimately ends when the heart and lungs fail.

As Scott's condition has deteriorated he is now virtually wheelchair bound, only able to stand to transfer and will soon need a hoist in order to to do this. As is always the case, added to the heartbreak is the reality of the financial difficulty that accompanies illness. Scott's family have just purchased their first/forever home but now they have to adapt it to fit Scott's ever increasing needs. The initial need for Scott is to create a bedroom and bathroom that he can access in his wheelchair. The cost of an adapted bath and closomat toilet alone is £15,000!!!!

Scott is a remarkable boy, who deals with so much and never complains, except when he loses on FIFA!! Hakan so desperately wants to raise money to help Scott, so this is our plan...Hakan and I are going to run..I will run the Leeds Half marathon in May and the Yorkshire Marathon in October. In the month of May Hakan will run and track 13 miles, over number of runs, and in October he will do 26 miles. So if you are able and at all inclined to, then please please do donate to this worthwhile cause that is so close to our hearts. In any case, thank you for taking the time to read this and to help raise awareness of of the monster that is Duchenne. There is no cure, there is just the chance for us to make Scott's time with us as comfortable as possible. Many thanks, Rachel and Hakan