On Wednesday 11th July 2012, Evelyn Rose Standen was born at Worthing Hospital weighing 6 pounds 14oz. From birth Evelyn was very sleepy and didn't feed well. Her parents 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 their hearts they 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 Craig (Daddy). 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 Craig arrived at Brighton, Evelyn was extremely unwell and on life support. They were told they suspected she had a severe case of a rare metabolic disorder called Non-Ketotic Hyperglycinemia (NKH). On Monday 16th July, the diagnosis was confirmed. There is no cure for the disorder, Evelyn wasn't going to get better and they would need to withdraw life support. Every parents worst nightmare was becoming true. They would have to say goodbye before they had even had the chance to truly say hello.

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

Whilst at Chestnut Tree House they were able to make some beautiful memories with their precious daughter, and act for the first time like a proper family away from the Hospital. They 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 parents take for granted.

Sadly on the 22nd July 2012 it was Evelyn's time to grow her Angel wings. Kathryn and Craig will forever be indebted to Chestnut Tree House.

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/

 

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