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
Thursday, 24 February 2011
Thursday 24th February - Delivery Day
After a long night for Grandma she kissed me goodbye to go home and get some sleep as Mummy and Daddy came in to start their shift. This involved a cuddle at first, of course and then a lot of suction as my morning yuckies reared their ugly heads. Mummy said it was like going fishing in my mouth for green goo and collected a sample for the lab to check. More on that tomorrow, I know, you can’t wait.
A big box arrived from the Trust offices which contained a lot of little purple bracelets with my name on. How exciting. Mummy and Daddy put their pounds in the pot and slipped one on each of their wrists straight away. I tried one on but it was a little big for me.
If you think one would look good on your wrist then please buy one! See below or across on how you can get one, or two or three or four….
There was another delivery today from Mummy’s work, which was some chocolate eggs for the prize raffle. Mummy is going to help wrap them along with some lovely cuddly toys which will be displayed ready for the 1st of March.
We had surprise visitors at lunchtime, my lovely little friend and x-hospital roommate Lucas came to see me with his Mummy and Daddy because he’d had a hospital appointment himself. Lucas has grown so much, I haven’t seen him since October. He is very handsome, I might have fluttered my eyelashes a little but I’m sure he started first.
He waved at me through the box windows, I said hello for a little bit but I was coughing a lot today and was pretty tired.
Phil at Gateway Peugout with Daddy
Daddy was invited to go to Gateway Peugout in Crewe who had a cheque for £50 for us. They had an internet campaign on Facebook to try and get new followers to their page and promised to give money to charity if they received 150 in a few days, thanks to Andrea Astles who hinted about it and some of Mummy’s Facebook friends and they shared £100 between our fund and the Cystic Fibrosis Trust, two very deserving charities.
I have been very unsettled for most of the afternoon but slept after my feeds. My Oxygen levels are needing to be high again which is a shame as I looked to be coping ok the last few days and was nearly looking like getting my nose pipes back.
I have been having a few twitchy episodes which which make Mummy and Daddy stand over me looking all puzzled. I need to tell them what’s bothering me but I don’t quite know how to.
Foot note from Editor – Please note that we were disappointed to find out today that the Cronkinsons Farm Charity Evening as previously announced, due to unforeseen circumstances will not be going ahead after all. However, we have been reassured that they are still running a charity raffle with all proceeds to come to the fund. Sincere apologies go to the fantastic Agency Ad Man Dave, who worked so hard on short notice on some fantastic posters for the event for us.