Katie Newell is a 18 year old teenager who enjoys life, but sadly for Katie she has suffered much pain and endured a long struggle. Katie suffers from Neurofibromatosis, NF1 for short. Nf1 is an hereditary disease and can affect sufferers either mildly or severely. Unfortunately for Katie the condition is very severe. Katie has massive plexiform tumours throughout her body from head to waist entwining her heart, trachea, lungs, pancreas and spinal cord.
Katie has already had several operations one of which was in Boston, USA. Doctors said Katie would not see her 5th Birthday but the Boston Children’s Hospital threw Katie a lifeline by decompressing her completely flattened spinal cord and rebuilding her badly deformed spine with titanium rods which fuse the base of her spine to the bottom of her skull. The surgery gave Katie a new lease of life.
Sadly for Katie the tumours are once more jeopardising her life. Doctors have once more diagnosed Katie’s condition as terminal stating that the tumours and their size will stop her vital organs from functioning. A scan revealed her tumours were so big they had completely squashed one lung with the remaining lung being compromised by the tumour attacking it from above and below, leaving Katie with only 30% function in her remaining lung.
Surgery does not seem to be an option as the tumours are attached to hundreds of little nerves making removal of the tumours impossible without total paralysis.
Two Years ago Katie took part in a drug trail in America, we flew there every six months for 2 years, sadly for Katie it showed no signs of working and she had some complications.More recently Katie has had surgery on her face to remove a large tumour from her face. For katie NF has decreased her quality of life dramatically. Katie has very little use of her left hand and needs to use a wheelchair when out and about of which she is not able to do alone. This is very hard for a teenage girl to burden and for a mother to watch this is heart breaking when there is very little you can do. Katie however takes it with such grace.
Katie spends most of her time on the computer, she draws some wonderful pictures and has quite a talent for animating, she is also in the process of writing a book again another talent!!!!.
Katie is a young lady who inspires many people who meet her. Her will to just carry on the best she can is to be admired.
As long as Katie keeps fighting so will i. The search for a cure must go on.
Thank you for reading x
Please Visit Katie's own web site and leave her a message in her shout box.
Thank you
http://www.youtube.com/watch?v=RrfC4sBNItE
This was made for Katie for her 18th Birthday