Kirsty’s Story

My fight against a condition called Neurofibromatosis (NF1)

Last updated
26th June 2009

Links I have updated:- 2007-2009 Diary, Events,

Hi! My name is Kirsty
I started I writing what life is like with Neurofibromatosis when I was 9 years old (1999).

I live at home with my mum (Julie), dad (John) and brother Chris.

I suffer from a condition called Neurofibromatosis (N.F) along with scoliosis.
I wear a Boston Brace to help support my spine.
I have written a book about my fight against the condition, which I hope to have published one day.

Online Donation

I am trying to make wishes come true for other poorly children and trying to raise £80,000 to send 30/40 poorly children and their families on a magical five day holiday to Centre Parc's. If you would like to make a donation towards my new target, then please visit my Just giving page where you can make a donation safely and securely to
'When You Wish upon a Star'

Please help to make a poorly child's wish come true by making a donation

"Thank You".

Thank You to everyone who has made a donation on my justgiving link this month

Please Note.

As you read this please keep in mind that all treatment and outcome results are specific to the individual patient and results may vary. I hope that by sharing my experience with NF, Scoliosis and my spinal fusion surgery will help if you or someone you know has any of the condition.

1998 - 2004	2005 - 2006 - 2007	2008 - 2009

	I had spinal surgery in 2005


Some of the fun events in my life plus fund raising events.

We are often asked how do you cope?
How we try and cope with our beautiful daughters condition
Click to read mum and dads journey with me

What is a Boston Brace?

A Boston Brace is a very hard jacket, which you wear under your clothes and goes from the top of your chest to the bottom of your hips. Click for more information about a Boston Brace.