My name is Jack, and I’m 12 years old. I have three sisters, the youngest being Ruby who is 18 months old. In January this year my Dad sat me down to tell me that Ruby had been diagnosed with Pearsons Syndrome. I had never heard of it before, but as I began to learn, my heart began to sink deeper. I had just started high school, struggling to settle in and just lost my Nana. The news came as a massive shock with a feeling of helplessness. I understand a bit about what Pearsons Syndrome is as I do science at school, understanding about cells and the body. Dad told me that Ruby's condition is one that will deteriorate at an unknown speed, and there is no cure. Her life on this earth is limited, with no prediction of when it will end. This could be next week or in few years time. It hurts me so hard now and I'm going to be utterly heartbroken when I lose my little baby sister. I would love for my Ruby to be given a good chance at life like everyone else. I don't want her to die. She is so special to us all. I like to dream that a cure can be found to save her life. She deserves it. She is so happy and cheery despite feeling rough from all the prodding and poking from all the treatments. I want to do this challenge to push myself well out of my comfort zone to try and raise some money and awareness to find a cure to save our Ruby's life so I can grow up with her.

On 24th August 2022 I will attempt the National Three Peaks Challenge in under 24 hours. Climbing Ben Nevis, Scafell Pike and then Snowdon. My dad will drive between the mountains and I will climb and navigate my way up them with my dad for safety. I have 24 hours from starting the challenge in Scotland to finishing in Wales. This is a crazy challenge and will push me so much both mentally and physically, but I will do anything to try and save Ruby's life.

Pearsons Syndrome which is under the umbrella of Mitochondrial disease for which the Lily Foundation is all about. Ruby has mass deletions in her mitochondrial DNA, although a genetic issue it was just a random mutation and she is extremely unlucky. There are around 20-30 living children with this syndrome in the world right now, that's how rare and unknown it is. 

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 today.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.