This last week in Omaha in America a large group of families got together for the first ever Peroxisomal Biogenisis Disorders Famiy Conference. We didn't go obviously, its a long way and a lot of expense, but this video was screened during the conference. I'd warn you now - its not the easiest thing for anyone to watch. And I'm still shaking now, i think it's just about broken me. But she's there, our little star, shining brightly, with all those other beautiful babies that lost their lives too soon. I send out the biggest hug to those families who know just how much it hurts.
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
Friday, 5 August 2011
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What a beautiful tribute to all those brave boys and girls. xrx
ReplyDeleteSo sad to watch but a very moving tribute to all the special little angels X x
ReplyDeleteVery moving :-( Xxx
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