My Story

In a bid to continue to raise awareness and money to fund research and support families living with mitochondrial diseases I will be running the iconic London marathon.

Our 2 year old beautiful daughter Ruby Wren has Pearson’s syndrome, a mass deletion of mtDNA. An unlucky ultra rare random mutation. Mitochondria power our organs to work and Ruby runs on low batteries. Although she is relatively well right now she won’t survive childhood, her progressive disease will stop organs working one by one. Currently affecting her bone marrow it will move on to other high energy needing organs; kidneys, pancreas, liver, eyes/ears, muscles, heart and ultimately her brain which I'm really dreading! 

I’m running the London marathon simply because she is well enough that I can, the time is now to fund research to help, in the future it will be too late. We have no idea what her quality of life will be in a couple of years even. Science can and will beat this, if a child's toy breaks, the first thing you do is change the batteries. We need some research on our batteries. Ruby is one of a kind, a true gift and is really teaching us (the hard way) to live for the day. 

Thanks as always to blood donors. Always cherish your health.

Please help me 🙏