George has popped into the Brewery a few times with his Mum & Dad (George was on soft drinks😉)
we got chatting and learned about George's story and between us decided to hold this event to hopefully help raise not only much needed money but also a little awareness to help spread the word.
The event itself is going to be a cracker and a lot of fun. All money raised from ticket sales will go towards the total.
Here is a little more about George....
At just 2 years old, George was diagnosed with a rare cancer (rhabdomyosarcoma) in his liver. That was a life changing moment. At the same time, George was also diagnosed with an ultra-rare genetic condition called mosaic variegated aneuploidy (MVA) syndrome – it’s a 1:1,000,000 occurrence.
The next 12 months were focused on getting George through the cancer. Due to the problematic site of the tumour (in the middle of his liver) it took an international team from the Bicetre Hospital in Paris and Kings College Hospital in London, to formulate and execute a plan that involved ground breaking surgery involving nano-knife technology (Youngest cancer patient treated with Nanoknife is cancer-free - BBC News). George was the first child in the UK to receive this treatment and the youngest in the world.
With George through his treatment and back home, living a relatively normal life again, our attention switched to MVA. However, with it being such a rare condition almost nothing existed in terms of patient advocacy, charity websites, general information let alone clinical trials. So, JB (Georges Dad) set up the MVA Society (www.mvasociety.org). This is the first – and only – dedicated MVA charity and patient advocacy group in the world. The aim is to run a research study to find potential treatments for this condition – which will include of course clinical trials when we reach that point. Its an exciting journey of discovery and one that has to be done to help children like George all around the world.
Rare isn’t rare – 1:7 people will be diagnosed with a rare disease. There are 7,000 rare diseases without any treatment or cure. Its often the dedicated and driven parents who make the break through in such situations.
