Once upon a time....

I was born in the evening of the 12th August 2003.
I was 4 weeks earlier than expected, but my weight was good - 5lb 13ozs.
My parents were delighted - they had been waiting for me to come along for many years.
I was cleaned & weighed, and then Daddy cuddled me while we waited for my Mum to be stitched back together !
After about an hour, though, things started to go a bit wrong...
The doctors thought I needed some special looking after, so they took me away.
I went to a place called the SCBU, which is a Unit just for Special Babies like me !
Mum & Dad were really really worried, and I couldn't spend that night with my Mum.
The special doctors did lots of tests on me, and we had to wait a long time for the answers.  
Mum & Dad came to live with me in the hospital, and everyone there was absolutely wonderful.

 

 (That's me in the middle with some of my fantastic nurses....
- they looked after me, as well as Mum & Dad, really well...)

Anyway, after about 3 days, they found out that I have a very rare chromosome condition. 
It's called Patau Syndrome ( Trisomy 13 )  
The doctors called it "lethal" and "incompatible with life" but I haven't learnt those words yet.

Mum & Dad were completely heartbroken !

They were told that babies with my condition do not usually live very long.

Here's a picture of me with Mum & Dad, taken at the SCBU.

One of my favourite nurses at hospital took this photo of us.
I spent almost a week living in the SCBU...

What happened next...