Blakely was born at 38weeks, he didn't feed very effectively so had his tongue tie cut at 4days old. Blakely then did not open his bowels for 18days, he was started on laxatives which helped but he would constantly scream. After 4weeks he started to be sick everywhere so was given reflux medicine which didn't really help. This continued until he was taken to a childrens hospital, after lots of invasive testa and 12 anaesthetics later, he was given a surgical jejunostomy in June, this worked well until the end of July. Blakely then lost almost half his body weight and would scream in pain that only morphine would help with. The medical team decided that he needed to be fed straight into his blood stream and that he had severe intestinal failure so he was sent down for another anaesthetic and fitted with a hickman line. After a further 3months in hospital he was allowed home continuously fed straight to his heart. In January of this year, he has been diagnosed with bulbar palsy and further tests are ongoing to find out why Blakely is having theses problems and ongoing pain. We do not know the future for Blakely. But he continues to smile through everything.