Hi, I'm Tom Luke and I'm planning on Skiing on an indoor Ski Machine called a Ski Erg for 24 hours to raise money for Lexi.

I was first made aware of Lexi and her condition when I ran the Great North Run in September last year for the Friends Of FOP charity.

Having two children that are around Lexi's age, her story and the lengths her family are going to to make a difference to Lexi's life and other sufferers, really hit a chord with me. Since last year I have been looking for a way that I can raise maximum awareness and fund raising for Lexi and this is how I've decided to do it!