My son Mason is a happy, enthusiastic 7 year old boy. He loves to run, dance and sing (as loudly as possible) and play with his Lightning McQueen and Dusty toys. He LOVES life :) 

Just before his 3rd birthday he was admitted to hospital with seizures the experts could not stop. He was placed in a  drug induced coma and taken to the John Radcliffe Hospital where he remained in a coma for 7 days. He came out of his coma on his 3rd birthday and we were so excited to see him but within minutes he started having seizures again. He continued to have seizures and over the next 6 weeks he learned to walk, talk, eat and even drink all over again. When he finally came home he was a traumatised little boy, still having seizures but somehow still managing to smile!

Mason continues to have seizures which at this point in time tend to come as waves of clusters, he is significantly and globally developmentally delayed and is trying very hard to get back some control of his right arm which unfortunately was quite damaged in the initial seizure episode. He is left handed now but after years of hard work he is using his right hand as support....on a good day! On a bad day his right hand will be clenched as he tries to control the tremor in his arm.

So it turns out Mason has MITO - Mitochondrial Genetic Disorder. In his case it is a mutation and it means that his body is not good at making energy that is needed for the his body organs. So he gets tired quicker than other children and needs regular rests or naps, food and liquids and unfortunately has seizures. 

There are many forms of MITO and it is a life limiting disease that has no cure. Lily Foundation is funding some amazing research to try to find a cure. They also provide much needed and appreciated support to families like ours.

Please help me raise some funds for Mason and for all the other Mito children out there. I'm going to walk my butt off to do it and also to get fit so that on his good days I can keep up with his running around and pretending we're on a treasure hunt... 'cause every little boy wants to be a pirate, right?

If you want to join me for a walk I would love the company!!! It starts today and ends 22 September 2018!!!