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 Neurofibromatosis (NF) ?


(
NF), causes benign tumours to grow on the nerve endings, Click for more information on (NF).

 


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.

 

 

   

Please sign my
 

       

 

Click to contact me by e-mail if you want any personal help and advice
 

Thank you  

 

 


 
My friends from hospital

Read about my friends

My favourite sites

Supporters



Pin Badges, Trolley Key-Rings and Books for Sale
With money raised helping
Children's charities

Also "Auction" Item

more items to follow soon
 


picture page

Press Cuttings

Money raised for

Events for charity


 

 

Thank you  


To my friends at the Copyshop, Cheadle.

Keith, Pat, Alex for all your support
 


 

 

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