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

Tuesday, 26 April 2011

Spare a thought

Peroxisomal Biogenisis Disorders, words that regularly haunt my day. These words might not mean much to many people but these words are the reason I lost my baby girl. Anyone who has been following Ellie's blog will know what a tough and emotional journey we have been on and the loss of a child is pretty indescribable, so I wont go there just now.
I am lucky enough to of had support from an amazing bunch of people via Yahoo groups and Facebook who inspired me during the last 8 months and I guess I felt I needed to give these people a little nod. They are all working hard to prepare for a big conference over in the States and have recently launched the Global Foundation of Peroxisomal Disorders website inorder to bring more families together who are affected by this disease. These families are amazingly brave and special people who devote their lives to their sick children.

As if I'm honest, right now I know I should be still supporting them, and checking out their care pages to check on their little ones, but I don't, because I can't, not yet.
Just like I can't re-read the early blog entries or look at the thousands of pictures I took of our little girl because it's too hard, it just washes over me, sadness and despair.
So instead I tidy and clean and create, because at the moment thats what grieving looks like for me.
But still, I was brave today and I looked at a post from Sarah Danielson about her little man Jordan and it made my heart soften and brought a smile to my face. So I'd like to share the article with you, if you're interested.


  1. The look on the little boy's face is amazing :-)

  2. They say a picture paints a thousand words, and this one certainly does. Xrx