neurofibromatosis cafe

A place to talk about NF, have fun and share.

Fighting for Katie!

This is an email I received from my new friend in the UK! – Reggie

Hi Reggie,

Im loving your web site, i have only just stummbled across it and as its
very late here in the UK im off to bed in a mo. i shall have a good old nose through in the morning. I just wanted to share my daughters site with you. Like you she has been a real star and battle through the toughest of times. Keep up the good work reggie feel free to contact us if you wish. All the best to you. take care, Vanessa

Katie Newell is a 15 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. Just over a year ago, Doctors diagnosed Katie’s condition as terminal again, predicting 18-24 months before the tumours 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.

Through our ongoing research into finding any medical development that may be able to help Katie We

have found, on the internet, a clinical trial that is going on in Indiana USA. A Doctor there has established that the tumours are made up of lots of different cells, these cells communicate with one another telling each other to grow. He has discovered that a drug called Gleevec, that is usually used in leukaemia patients, has stopped the growth of the tumours and, so far, show positive signs in shrinking them. This is in the early stages of the trial but it is Katie’s lifeline. The medical team in the UK who look after Katie have agreed that it is something that we have to try.

The trial is to start on 29th November. We are raising money to fund the trial, although the actual drug is free the use of hospital facilities is not & being in America it is very expensive and we will have to return to Indiana every six months for repeat MRI’s. (MRI scans $4000-5000, blood tests & doctor consultations ect).

If there is any way you can help we would be very grateful. Katie is a very special little girl who never complains about her illness and her wish is to work with animals when she gets older; we just hope we can fulfill that wish.

Thank you for you help

Please Visit Katie’s own web site and leave her a message in her shout box.

Thank you

Always fighting never give up


June 28, 2007 - Posted by | neurofibromatosis


  1. What a wonderful but also heartbreaking story. I am so glad that people with NF can come together on your site Reggie and share experiences and unite as a group. I would find great comfort in knowing that I wasn’t alone and that there were people like me who are having a rough go at it but they’re enjoying life nonetheless. Katie is certainly a shining example of someone who won’t lie down and let NF defeat them! Good for you, Katie!!! You rock!!!

    Comment by adgiant | June 28, 2007 | Reply

  2. I can’t even begain to express how happy I feel because of Katie and all of the other wonderful people I have been in contact with sence the website. I am being help by all of you, by your emails. Your support gives me strength to keep working hard to keep awareness alive.

    Comment by Reggie Bibbs | June 29, 2007 | Reply

  3. Katie im so proud of you
    Never are you without a smile on your beautiful face
    I am so proud to have you has my little cousin and i cant believe how much you have grown up recently. Keep on fighting my little star your an inspiration to everybody.

    Love your big cousin Lauren xXx

    Comment by Lauren Newell | April 21, 2008 | Reply

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