I remember the day I first saw those two pink lines, the test was positive, I was pregnant, WOW! We felt so lucky, it was our first month trying. Craig and me were so happy and excited! My pregnancy went really well. At our 12-week scan everything was perfect, we had another scan at 17 weeks, which confirmed we were expecting a girl (and so followed lots of shopping for dresses and pink). We chose a name, Evelyn Rose. Our final scan at 20 weeks, again confirmed everything was perfect and our little girl was developing well. Evelyn seemed to Hiccup often during pregnancy but I was told it’s normal for babies to have hiccups in pregnancy. No one was concerned so I didn’t think anymore of it. Now just to wait for the big day! I was booked in for a c-section at 39 weeks as Evelyn was breech. The night before I had a feeling something was wrong, I started panicking. I told Craig I was worried there was something wrong with her brain. But how could anything be wrong? The doctors said everything was fine; I had no problems during the pregnancy. We put it down to my nerves. In the morning we phoned the hospital to confirm my admission, and off we set, a new chapter was starting in our lives. As we left our home we excitedly said, next time we’re here we’ll have Evelyn with us! After months of waiting she was finally going to be here! Wednesday 11th July 2012, Evelyn Rose was born at 12:42pm in the middle of a thunderstorm! Dramatic entrance to the world! I remember the moment we first saw her as the surgeon held her up, I was mesmerised, she was so beautiful. And then she peed on the surgeon! The whole theatre laughed and the song Yellow by Cold Play was played. Evelyn’s APGAR score was 9 and she weighed 6 pounds 14oz. They said she was a little sleepy but weren’t worried. She was then handed back to me; I just watched her blowing little bubbles from her mouth. I couldn’t believe how perfect she was, She had a full head of blondie hair, her fingers were tiny, she peeped open her eyes. We were so proud, our daughter was now here, we couldn’t wait for family and friends to see her, and to get home to begin our new life. Evelyn continued to be sleepy all the time and didn't feed very well. We were told not to worry and it was just one of those 'newborn' things. On the Friday (2 days old) it was evident that something really wasn't quite right. Evelyn was transferred from the ward with me to Special Care as it was suspected she had an infection. The test results came back, no sign of infection. A nurse commented this was a good thing, but in our hearts we knew something much worse may be wrong. That evening Evelyn started needing a little bit of help with her breathing. First thing the following morning the Doctor came to us. Evelyn's condition had deteriorated in the early hours and now required much more help breathing. She was on CPAP. She was to be transferred to another Hospital which had a Neonatal intensive care unit for further investigations and more specialised care. We both went into a state of shock, what was wrong? Something serious, but what? A neonatal transfer team came to take Evelyn in a specially adapted Ambulance. I was discharged and we dashed home to collect a quick overnight bag before heading to the Hospital. The transfer team had given us an information pack which provided information to parents with babies in NICU, there was a section about withdrawing care, which we quickly bypassed, that wasn’t going to be Evelyn. It took forever before we were able to see her. They had to follow procedure and go through all the various tests to try and work out what was wrong. When we finally got to see her she was in a completely different state, wires and monitors everywhere, blood stained clothes, and an IV line. She was now being fed via NG tube. The machines seemed so loud, constant bleeping. She looked so helpless. The whole scene looked so very wrong. Evelyn’s consultant told us they didn’t know for sure what was the matter, but thought it might be a metabolic disorder, they were reluctant to tell us anymore, and at this stage we were too scared to push the subject in fear of what we may hear. We had never heard of a ‘metabolic disorder’. We had to stay strong for our little girl, we would get through this. We were lucky enough to be able to stay on the NICU in one of the parent bedrooms; Evelyn was always just a walk down the corridor. The following morning we decided we needed to find out more, so we pushed the consultant, she told us she thought Evelyn had Non-Ketotic Hyperglycinemia. What’s that? What does that mean for Evelyn? We were told the basics of NKH and the prognosis wasn’t good, Evelyn wasn’t likely to survive. The hiccups during pregnancy and after she was born were seizures. That day our world came crashing down. Realisation struck…we weren’t going to be bringing our little girl home. A special blood test had to be done and sent to London, this was to test her glycine levels to indicate NKH. On Craig’s birthday, it was confirmed, Evelyn had NKH in the severe form. We were told she would not survive and there was only a very slim chance she would be able to breathe on her own. We made the heart wrenching decision to withdraw Evelyn’s care on the 20th July, the Neonatal transport team at the Hospital told us we didn’t have to do this at Hospital we could do it at home or anywhere we wanted. We chose to take her to a place called Swanbourne Lake. It’s a special place to us and we wanted to take her there so we could have one relatively ‘normal’ family memory with her. We were able to take her in a pram with the machinery all hidden underneath and go feed the ducks. When the time felt right we went and found a secluded spot under a tree and this is where we extubated. We said our goodbyes and expected our daughter to pass away in our arms…..however Evelyn had other ideas. She started to breathe on her own. We couldn’t believe it. The nurse told us they had no idea when she might pass, we could have minutes, hours, days even weeks, they didn’t know. We went to our local children’s hospice, Chestnut Tree House where they looked after Evelyn and us. We were able to make memories with Evelyn that we never thought we’d be able to. We were able to cuddle her properly for the first time now that all the wires and machinery didn’t surround her. It meant so much to have that precious time with her. Evelyn spent approximately a day and half with us at the Hospice before she grew her angel wings at eleven days old. R.I.P Beautiful Girl