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Katie Ann Burke

Until she was about ten years old Katie was a vibrant, healthy, energetic and robust child, enjoying dancing, swimming and cycling. But during school year 5 it was noticed that her speech was becoming a bit less clear and that she was starting to walk on her toes.


After seeing several doctors and a failed attempt to sort out the problem by physiotherapy and lengthening her ankle tendons in 2007, she was referred to Great Ormond Street Hospital in 2008, where doctors realised that she was suffering from a severe progressive muscle deterioration. Initially it affected her legs, face and swallowing muscles, but eventually her torso, neck and arms.


By 2009 Katie could not walk outside the house, and by early 2010 she became completely wheelchair bound. She was starting to choke on food and drink, and could no longer be supported at her mainstream secondary school, so she was moved to a special school.


In November 2010 she suffered a severe chest infection caused by the deterioration of muscles, and was referred as an emergency case to the paediatric intensive care unit at Addenbrooke's Hospital in Cambridge. It was a close call, but Addenbrooke's saved her life. She had to have both a tracheostomy to help her breathe, and a gastrostomy to feed her, and then spent five months at Addenbrooke's rehabilitating and waiting to come home. Her condition is probably genetic in origin and is still undiagnosed.


She now needs twenty-four hour care and cannot eat or drink, but managed to do almost another two years at school, gaining some GCSE's in the process. Katie likes to get out with her dogs and has seen several concerts over the past four years, which she has really enjoyed. She has written this story of her life so far, and is in the middle of writing a piece of fiction.


Katie is a very caring and passionate young lady, and is determined to make the most of her life within the limits of her condition.


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