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George has been in hospital all of his life and is a long term patient at Great Ormond Street Hospital in London. Where he spends long periods of time having numerous operations and tests.
After spending so much time in various hospitals George's parents who live in New Brighton have now set up their own charity which aims to not only help with their little boys diagnosis and support his treatment but they also want to raise awareness, gathering more information and support for other children and their families who are facing similar conditions.
George's Mum Emma's been telling Heart there isn't an aspect of their families life that isn't affected by the three year olds illness. The Johnson's have to split much of their time between home life in Wirral and Great Ormond Street Hospital in London. Emma says George's big sister Ava regularly misses her parents and George all being together when he is receiving treatment in the capital.
The youngster is due to start pre school in September and his Mum and Dad are hoping he will be able to make the start date at the beginning of term with all the other children. George will undergo more tests and operations over the next few weeks. His Mum Emma has asked doctors if they can try and make sure he will make his first day but with medics baffled by the very rare condition they will struggle to predict what will happen.
The family have never spent a Christmas all together at home in New Brighton, they're hoping this year they'll be able to. It'll mark 12 months of gruelling treatment for George as well as constant fundraising to help fund the Johnson's endless and lengthy hospital trips.
You can listen to more of George's story from his Mum Emma here..