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Page last updated at 10:57 GMT, Wednesday, 13 January 2010
Jessica Wales tells her own story

By Jessica Wales
Organ donation campaigner

Jessica Wales
Jessica Wales was in the operating theatre for many hours

During her life, Jessica Wales, from Westgate-on-Sea inspired people across the country with her relentless campaigning and positive attitude to life in spite of suffering from cystic fibrosis. Two years ago she told us her story:

My name is Jessica Wales and this is my life.

I was born on the 19th of March 1989 to my mum Jacqueline Susan Wales and my dad Harry William Wales.

My mum was 26 years old and my dad was 34 years old, I was born at 5.46 am and everything appeared normal.

Oh how wrong everyone was.

Everything was normal until I was about four months when I developed pneumonia and almost died. After that I was finally diagnosed with cystic fibrosis which is a life threatening condition.

From then on I was in and out of hospitals receiving treatment for several different infections for a number of years till everything calmed down for a while.

Now we can skip a couple of years till the age of four when on the 2nd of February 1994 my nan died from leukaemia. I was devastated and still miss and love her so much to this day, but later that year when I was five, my dear little brother was born and I loved him from the moment I saw him.

At this time I had stopped needing to go into hospital because I was quite well till the aged of seven when I got MRSA and had to have a very strong drug which knocked all my bugs out.

After that I was ok till 11 when I started three monthly intravenous antibiotics and had a portacath fitted which is a little device which is under the skin and you can use it for IVs.

Emily Thackray and Jessica Wales
Jessica Wales (right) had just 11% lung capacity

Although I had a very strict regime with medication nebulisers physiotherapy I led a normal childhood and didn't let it rule my life. I was able to go horse riding and go to brownies and never had any more absence from school than my friends.

In 2001 I was diagnosed with diabetes and started insulin, everything seemed fine and I continued three monthly IV's until in 2005 I was told I might need a transplant.

At that moment I looked out of the window and there was a little bird sitting a tree outside. As it flew away I wished just for a second that I could fly away as well to get away from all of this, but then I looked back at the doctor and said ok I'll go for assessment. I was sent for assessment, but first I had a peg fitted which I receive food over night through. I also by this time needed oxygen over night.

In July I went for my assessment and was told I needed a transplant and went straight on the list. Now it was just a waiting game.

Everything from then seemed crappy until I got over the fact that not many people get their transplants due to waiting lists being so long because there are not enough people signed on to the organ donor register.

So anyway it's been nearly two years now and only one false alarm I'm getting kind of tired of it now and starting to want to give up some days, but I carry on soldiering and pray that it comes; my friends and family keep me strong

So that's my life so far who knows what the future holds...

After a four year wait, just after Christmas 2009, Jessica received a double lung transplant in an "11th hour" operation through the night at Harefield Hospital.

Jessica Wales died on Tuesday 12 January 2010, she was just 20 years old.



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