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Jude has a rare genetic condition. So rare that it doesn’t even have a name. Unfortunately, this means Jude is faced with lots of challenges.
Jude has severe epilepsy which cannot be controlled – on an average day he may be having seizures 70% of the time. He has lymphodoema, a condition which causes his limbs to swell, and currently is untreatable. He is certified blind, although his family often continue to see small improvements in his visual awareness. He cannot swallow safely, so last August was given a gastrostomy, which is where food is fed to him via a tube inserted in the stomach. He can’t move around, although occasionally surprises his family by rolling across the carpet! He is unable to talk, so it is hard to know if he is trying to communicate.
But, what makes Jude happy, is whizzing a long Brighton seafront in a cargobike with the wind in his face, surrounded by his brother and sister. Jude’s mum and dad usually rent these in the summer.
So, Jude’s amazing family, friends and supporters made it their mission to raise funds for his own cargobike, and other specialist equipment that will enhance Jude’s life and support him with his additional needs.
They initially set their target to £3000, an amount they thought they may struggle with but, together have now smashed that target and raised over an incredible £10,000 for Jude’s medical needs!
