Being told your child is going to die and there is nothing anyone can do is not something anyone prepares you for in any parenting book. Organising their funeral is just not the way life is supposed to be.

This is the story for both Claire and me. Both our children (My son Jacob and Claire's daughter Lauren) were diagnosed with mitochondrial disease. 

Lauren died in October 2011 1 week before her first birthday and Jacob in April 2012 when he was 16 months old.

The Lily foundation have helped us both in so many ways. From support at the most difficult of times to funding vital genetic testing and research into diagnosis that gave Claire T crucial answers allowing her and her husband Matt to know that Leo and Georgia their other two children are mito free.

But on a very personal level, the Lily foundation gave us each other. We were introduced to each other and are now such important parts of each other’s lives. We have a friendship born out of tragedy but one that we are so very lucky to have. We are gifts our children left behind to help us be ok. But without The Lily Foundation we never would have met.

We have run together before but a 10k race in 2016 and 2019. I have run a half marathon or two, but this is both our biggest challenge yet in many many ways.

For Claire T the jump from 10k to Marathon is a big one and I will be running 1 week after my 50th Birthday and the 21st of April is the day after Jacobs angleversary. We are both nervous and excited, but we know the love we have for all our children especially Lauren and Jacob will get us round. The families we are lucky enough to meet who live with mito everyday who endure so much more than the pain we will feel on the day with motivate us. Our love of all things Lily will keep us smiling when we want to cry (but I know we will do that too) and the fact we will both get to hug Liz Curtis at the end to say thank you for all she has given us will be worth a few toenails.

Please please donate if you can and help us help The Lily Foundation to continue to support families just like ours