Evie's mum and dad Patrick and Julie sent their story to Left Heart Matters.

Evie came into the world on October 24, 1997. She was perfect in our eyes, and I have to say, the eyes of the midwives as well. It was only 12 hours later that we all started to view our precious little baby daughter so differently.

We were on the way home, I was starting to pack my bag, when the paed came into our room for that once over examination before giving us a passport out of the maternity hospital. She was newly qualified, over anxious to do everything right and so sweet. I was in pain with the usual after labour problems, but that went to the back of my mind when this young lady's face changed and she said those horrible words "there's a problem, I think I can hear a heart mumour".

Off Evie and I went round the hospital for an X Ray, Scan and Echo. Back to the room and the long wait. The young paed came back, with seniors in tow and they broke the news. Although earth shattering, the worst part was that they admitted that they didn't know exactly what was wrong, simply that it was a heart problem.

An agonising wait then took place whilst they decided what to do with our Evie. They tried the Brompton, who said they were sending a heart specialist the following Monday who would take a look at her then. Until then, they thought it best to keep her in the Special Baby Care Unit. This was Friday, they wanted to "observe" her until a specialist could see her on MONDAY! NO WAY! For some unknown reason I wouldn't give in to this, my husband and I wanted an answer, reasons, a decision on what was wrong now, not MONDAY!

Brompton was full and couldn't take her, but they suggested Guy's were the cardiac paed specialists anyway so we should give them a try. Thank God.

One phone call and within an 1 1/2 hours, they had sent a doctor and intensive nurse to see Evie. The next time I saw my daughter she was on a life support machine and well into heart failure.

We followed the ambulance to Guy's (we even had a puncture but didn't realise, such was our focus on what was happening to us all). Within another hour they had done the necessary tests and a diagnosis given - Hypoplastic Left Heart Syndrome. And then there were the options, risks and those awful statistics!

I just couldn't get out of my head how I hadn't spent that first night with my daughter because I felt to rough after the birth. me, rough, what about her! Now I stood a chance of losing her altogether.

Evie underwent the Norwoods 1st Stage the following Monday and although we thought it was the worst time of our lives, the medics assured us she sailed through it. Within three weeks we were home and I started being a proper Mum.

Life somehow got back to a kind of normal and it wasn't until April that it all started to crumble once again. Back into Guy's with a very blue little baby and Stage 2 loomed round the corner.

This time we knew how, what, when and it was dreadful. But true to Evie's own attitude to life, she once again sailed through the operation and we went home within two weeks and then only that long as they had to prepare Evie for surgery for a week beforehand.

Now its November 23, we've just been to Guy's for a parent's open day and Evie had a fight with one of the other kids in the creche!

She's wobble walking, talking, growing everyday and a bundle of love and joy. She's an inspiration to us all, life has clear priorities now and seeing her face opening all those beautiful 1st birstday presents made me an even stronger person, wife and Mum.

We love her, bless her, our darling Evie.