Oct 142012

My daughter Bob is 16 months old. She is walking confidently, running over confidently and she is starting to say several words. My heart gives a little leap every time she says something new. The other day when she was asked if she would like some more potatoes she answered, ‘Tatoes!’ in the cutest little voice!

Imagine if that was the last word she learnt. Imagine if her development stopped and began to deteriorate. Imagine if she could no longer walk and talk. Some parents don’t have to imagine!

‘Rett Syndrome is a debilitating disorder which most often strikes previously healthy little girls just after they have learned to walk and say a few words and begins to drag their development backwards.’

Until recently I had never heard of Rett Syndrome. I still can’t believe that it is possible for a healthy little girl to suddenly stop developing and lose the skills that she has already acquired. How heartbreaking must that be for a parent, to watch their daughter start to deteriorate before their eyes?

Up until 2007 there were no treatments available and there was nothing anyone could do, except watch these girls grow ever more disabled as they grew up. The reversal experiments of 2007 showed that Rett Syndrome could be the first curable brain disorder which could lead to better understanding of other neurological conditions, such as Autism and Alzheimer’s.

When Jen from Love Chic Living contacted me about raising awareness I was keen to help. More awareness means more donations and more donations gets Reverse Rett closer to finding a cure.

Jen met twin girls Olive and Tilda through her Tiny Talk baby signing classes over 2 years ago. 1 year later (at 18 months old) Olive was diagnosed with Rett Syndrome. Her twin sister Tilda is not affected.

This is a video that their mum Janie made after Olives diagnosis. Make sure that you have tissues handy.

Janie also writes a blog, Olive’s Rett Syndrome Journey.

October is Rett Awareness month. If you would like to help us raise awareness you can do so through social media. Follow the hashtag #olivesarmy If you would like to donate visit the Rett Syndrome Research Trust.

 Posted by Charlotte on October 14, 2012 Blogging For Good  Add comments

  10 Responses to “Olive’s Army”


    A beautiful post Charlotte, thanks so much for joining in x


    My husband’s sister has Rett Syndrome, it really is a devastating condition. Thank you for helping raise awareness, very few people know about it (I had never heard of it before). I hope that they are able to find a cure.


    It must be unbearable. It’s heartbreaking! x


    Thank you for sharing this, i had never heard of this condition! how heartbreaking for the family. I will keep my fingers crossed more can be done!


    Thankyou so much for sharing our story in such a beautiful way

    …..Janie Beaumont.. ‘Olives mummy’ xxx


    I’ve never heard of this, it sounds so incredibly sad. Well done for raising awareness on this and what beautiful little girls they are. Here’s hoping that developments can continue and help many children and their families in future xxx


    Thank you, Charlotte.

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