Mummy went home this morning because she wanted to say goodbye to Marlee and Lilly, they are going on an holiday to Devon with Mummy's cousins. She was heading back to see me when I my brain switched off again. She got to me in time but all the doctors said that Daddy has gone very pale. I'm not sure how often I am going to make their hearts pop out of their chests or make their faces red and blotchy, but I do know I'm tired and missed Harry visiting and all the nice choccies and biscuits she brought. And Lou who brought Christmas pressies which we peaked at, lots of pretty lights. Thank you secret Santa by the way! X
Mummy and Daddy said that they live at the hospital now, that I could go home or to a hospice but they are scared incase I died in the ambulance. So they want me to stay here even though it's not very nice for them. They like to help as much as possible because the nurses are rushed off their feet, they make sure they do everything they can for me, but they also clean up after themselves, change the loo rolls and try and feed the staff when they are looking tired. They know we can't stay here indefinitely but really don't know what else to do. I don't think anyone really knows anything except that there are dark days ahead.
I was born on the 4th of September 2010. On March the 3rd 2011 at six months old I died, because of a rare genetic disorder called Zellweggers Syndrome. I have lived because of people who loved me more than anything else in the whole world. This is my lifestory...
How to get the best out of this blog...
All blogs post are more recent first, if you want to read about Ellie's Journey I'd suggest starting from the first post back in September 2011 (October Posts) and read on Chronologically from there. It will make more sense and you'll get to meet the little girl who gave my life purpose.
Thank You for reading - every new reader shows that she has met another person and in her short life made such an impact. x
Thank You for reading - every new reader shows that she has met another person and in her short life made such an impact. x
Wednesday, 15 December 2010
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Ellie, you have wonderful, strong brave parents, and lots of fantastic people taking great care of you. You are such a brave little girl, and obviously so loved.
ReplyDeleteHoping your family can take just a tiny bit of comfort in knowing that there are also lots of other people who care too xxxx
I second that and am still talking to him upstairs for you guys ;) x
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