The story of Bailey

Bailey is 9, he loves music, dancing and watch his favourite TV programme Balamory. He has the best giggle and is the bravest boy I know. Bailey has Luscan Lumish Syndrome SETD2 he is one of less then 100 in the world with this diagnosis. Its a neurological syndrome so the conditions that Bailey has all affect his brain. He has autism, epilepsy, hydrocephalus, hypermobility, hypotonia, chairi malformations and in 2019 he was diagnosed with his first brain tumour. Bailey went through unsuccessful chemo and last year he was diagnosed with a third brain tumour. The tumours are connected to his mutant gene SETD2. Bailey battles through everything with a smile on his face and makes me proud everyday ❤