Story
Here is Eliza when she was only 8 weeks old, a perfect little bundle of joy and the youngest guest at our wedding in 2011.
After this, Eliza learned to roll over, to sit up, to crawl and started to talk (she could say ‘tractor’ and ‘cucumber’!). She developed like all babies do until about 15 months when her Mum and Dad realised she wasn’t reaching all of her milestones. Heartbreakingly, Eliza began to regress, and she slowly lost her ability to do all those things, to move and to communicate.
At three years old Eliza was diagnosed with Rett Syndrome. A rare neurological disorder that primarily affects girls. It is the cruellest of
all disorders as your precious baby develops normally until toddlerhood then Rett Syndrome steals away her ability to speak, to walk or to use her hands.
When my little boy came along and reached 15 and 18 and 20 months it broke my heart to imagine him losing his ability to crawl over to us in the morning, to say ‘Dada’ when my husband came home from work, to point or sign when he wanted something. Eliza is an incredibly brave and amazing little girl, and her parents are superstars.
Eliza is six years old now and has bravely learned to walk a few steps in the last year (after her parents were told she would never walk) but she is still non-verbal. Cognitively, Eliza is just like any other six year old but she has to deal with the frustration of a body that won’t let her be a regular six year old.
The very hopeful news is that Rett Syndrome has been reversed in the lab. This is HUGE. Imagine. There is a very real possibility of a cure. So please help me to raise money for Reverse Rett who is working on the
roadmap to a cure.
I have signed up to this challenge a little late in the day (2 weeks until the trek!!), and those of you who know me will know I am minus-fitness but if you can donate any amount at all that would be really fantastic.
To learn more about the exquisite Eliza follow her journey at HopeForEliza page on FB.
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