For those of you know us you will know that our son Harry was diagnosed Leigh's Syndrome, a mitochondrial disease, when he was 21 months old. Due to his condition Harry is unable to walk or talk and has complex epilepsy. Despite all of these challenges Harry is literally the happiest little boy we think you will ever meet. Words cannot describe how heartbroken we are and we have had to learn to accept and to live with the fact that we are not going to have our beautiful and cheeky little boy forever. Unfortunately this is the reality for every family who has a child with Mitochondrial disease.  We make the most of every single moment we have with Harry who will be 9 later this year.

The Lily Foundation were there for us when we first received Harry’s diagnosis and had little or no information about the disease. They have helped our family and many others with fantastic events which bring families and doctors/experts together to share information and experiences about this fatal condition. We cannot express how amazing they have been.

In May ‘Team Harry’ (Stuart and I plus 9 trusty friends) are going to be attempting the Rat Race. All of us will be running a minimum of 13 miles with 150 obstacles. Some will be going for 20 miles combined with 200 obstacles! This is going to be a HUGE challenge! Please help us raise as much as we can for the Lily Foundation so they can continue to support families like ours.

The Lily Foundation was founded in Lily's memory, having lost her battle to Mitochondrial Disease at just eight months old. The charity aims to give hope, answers and support to the many other children and families that face the challenges of this disease.Did you know every twenty minutes a child is born who will develop Mitochondrial Disease by the age of 16! There is no cure for this disease which is for many, debilitating and life limiting.Please stand with us and fight Mitochondrial Disease and fight for hope.