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
Saturday, 16 October 2010
Thursday 30th September - Going home for the first time.
Daddy and Mummy got sad news today - results had come back from Alder Hey on some Knee Xrays taken. They showed some 'stippling of the bone' which means my joints aren't forming properly. This along with some of the other concerns means that they think I have a genetic disorder called Zellweggers and I may not live to see my first birthday. We have to go back to Alder Hey soon and meet a very brainy metobolic scientific doctor called Dr Morris who will be able to explain it in full
We were supposed to be happy to go home but they are very very sad.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment