Gemma's London Marathon
So I’m running the London Marathon for L’Arche. Many people may not have heard of L’Arche and I will get on to that shortly but I firstly wanted to explain what my connection to this wonderful organisation is.
Have you ever heard of MLD (Metachromatic Leukodystrophy)? If you have chances are that a member of your family has been diagnosed with this disease if you have not then you would have been the same as me, oblivious to what an awful disease this is.
A few years ago I met a lovely lady called Viv, we met through Kelly’s Fitness Practice, where we both try to keep fit, and who are helping me with my Marathon training. Viv is the sort of lady who is always smiling and just so lovely you can’t help but feel relaxed and happy when you’re around her. As time goes on life happens and sometimes not very nice things, life changing, heart breaking things can happen, for me and my family is was the loss of our beautiful Mikey who was diagnosed with Neuroblastoma and unfortunately lost his fight against the disease aged 8. All through this time we as a family tried to raise funds to help Mikey and when there was nothing that could be done the money was spent on a holiday to America for him. Through this time Viv stood with my family and helped to raise funds, was at most events and there with a shoulder if needed. Always smiling.
So you can see that Viv is a very special lady to me and my family but she is also an exceptional lady who has a son named Scott. Scott is 45 years old and was diagnosed at the age of 23, just as he was completing a History degree at university, with MLD. MLD is an autosomal recessive genetic disorder which has no cure. MLD is caused by a deficiency of the enzyme Arylsulfatase A. Without this enzyme sulfatides build up and eventually destroy the myelin sheath of the nervous system. The myelin sheath protects the nerve fibres without it the nerves in the brain (central nervous system) and peripheral nerves (peripheral nervous system) cease to function properly. Life is very different for Scott but he still has things that he enjoys to do like, going to the library, history museums, music and most importantly being in a place where he is safe, supported and encouraged to have the best possible life. Viv has worked tirelessly for many years to get MLD more widely known and to find a place where her son can be happy for life, somewhere where he is not pushed to do things he doesn’t want to but somewhere where they get to know him and support, love and look after him for many years. It has taken time but Viv has found that place now and Scott is so happy and Viv is confident that her son will continue to thrive and live the life he so truly deserves and that is because he is now a part of the wonderful community that is L’Arche.
Staff at L’Arche have made it their mission to get to know Scott and enable him to enjoy the things that are most special to him, their personalised treatment for Scott ensures that he can live his life to the fullest filled with everything he enjoys. For this first time this past Christmas Scott even was assisted to buy his family Christmas presents which was something that he had not been able to do for many years. These small things that we take for granted and don’t even think twice about can mean so much to a family and these are the things that L’Arche do.
So please help me to raise money for this wonderful charity which holds a very special place in my heart, along with so many others. We are all touched at some point in our lives by something that moves us and makes us want to give back and this could be your chance.