On Wednesday 11th July 2012, my beautiful Daughter Evelyn Rose Standen was born at Worthing Hospital weighing 6 pounds 14oz following a very easy pregnancy. From birth Evelyn was very sleepy and didn't feed well. We were told not to worry and it was just one of those 'newborn' things. On Friday it was evident that something wasn't quite right. Evelyn was transferred from the ward with Kathryn (Mummy) 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 see Kathryn and myself. Evelyn's condition had deteriorated in the early hours and now required much more help breathing. She was to be transferred to an intensive care unit in Brighton for further investigations and more specialised care.

By the time Kathryn and me arrived at Brighton, Evelyn was extremely unwell and on a ventilator. We were told they suspected she had a severe case of a rare metabolic disorder called Non-Ketotic Hyperglycinemia (NKH). On Monday 16th July, my birthday, the diagnosis was confirmed. There is no cure for the disorder, Evelyn wasn't going to get better and we would need to withdraw her breathing tube. Every parents worst nightmare was becoming true. We would have to say goodbye before we'd even had the chance to truly say hello.

Friday 20th July 2012 we took Evelyn to Swanbourne Lake in Arundel where we were able to feed the ducks before withdrawing her breathing tube. We said our goodbyes and had what we thought were our last cuddles. After removing her breathing tube Evelyn started breathing by herself. She decided to battle on for approximately another 35 hours. During this time we were fortunate enough to be under the care of Chestnut Tree House Hospice who supported Evelyn, Kathryn, our family and myself.

Whilst at Chestnut Tree House we were able to make some beautiful memories with our precious daughter, and act for the first time like a proper family away from the Hospital. We were able to take Evelyn for a walk in a pram, bath her for the first time, take her swimming, show her some sports cars, take her on a swing and she was able to see her first glimpse of British sunshine! Simple things as a parent we take for granted.

Sadly on the 22nd July 2012 it was Evelyn's time to grow her Angel wings. We will forever be indebted to Chestnut Tree House and therefore have decided to raise funds in memory of Evelyn. Please give whatever you can for this very worthwhile cause. If you would like more information about Chestnut Tree House, please visit: http://www.chestnut-tree-house.org.uk/

Many thanks for taking the time to visit my JustGiving page.

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