Story
16 days before my 53rd birthday, I am going to run my first marathon. I am running to raise money for two charities - The MVA Society and Children With Cancer UK. Please read on so that I can explain why I am attempting a marathon, and why any donations would be so gratefully received.
Friends of mine, Jon & Rachel Bracey, have a little boy, George, who was diagnosed with cancer when he was two. The reason that George developed cancer, is that he has an extremely rare genetic disorder called MVA (Mosaic Variegated Aneuploidy). When George was three he underwent pioneering surgery, that fortunately removed the cancer, however, MVA means that there is a high probability that he will develop cancer in the future.
When Jon and Rachel first tried to find help and information, they discovered there was almost nothing available.
There is currently no cure for MVA, no treatment, and very little medical knowledge about it. At the time, there were no charities dedicated to MVA and no active research projects focused on understanding or treating the condition. They were left facing an incredibly frightening situation largely on their own.
Rather than accept that, Jon and Rachel decided to do something remarkable - they founded The MVA Society - a charity that supports other families facing the same challenges. Their bigger goal is to fund research at University of Cambridge to help develop treatment for MVA and, ultimately, find a cure.
As a father of two boys myself, hearing Jon talk about everything George and their family have gone through was deeply moving. I tried to imagine what it must be like: George has spent such a large part of his young life in hospital, when he should have been a carefree little boy - playing, laughing and having fun.
Jon and Rachel have had to live with constant uncertainty, never knowing what the next day, week, or year will bring. I really admired their strength and resilience and I felt strongly that I wanted to do something to help.
Although MVA is incredibly rare, progress in understanding and treating it could also benefit research into many other genetic disorders, so the impact could reach far beyond one condition.
As The MVA society does not have London marathon places of its own, I was fortunate to secure a charity place through Children with Cancer UK. That means all donations will be split equally between two charities doing incredibly important work.
Training through the cold, wet, dark winter months has definitely been challenging, and it was going well until recently, when a knee problem flared up. I hit a low point during a 34km training run when at 32km, my legs gave up completely and refused to cooperate - but obviously that’s totally insignificant compared to what George and his family have had to go through!
Thank you so much for taking the time to read this. If you are able to donate, even a small amount would mean a great deal and help support two truly worthwhile causes
NB. I’m not sure my words fully bring to life George’s story, so please click the YouTube link below, where there is a video that shares more about his journey. And if you do donate through JustGiving, please note that you can adjust or remove the suggested platform fee if you prefer, rather than giving a percentage.
https://www.youtube.com/watch?v=J6geiOi7-p4
https://www.childrenwithcancer.org.uk/
Thanks for taking the time to visit my JustGiving page.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.
