30/09/2015 05:47 BST | Updated 29/09/2016 06:12 BST

Hope in Action #NoMoreEmptyArms

Yay its October the month of darker nights and Halloween but for me it's also the start of my #nomoreemptyarms campaign.

It's the time when I drive you all insane with information about Rett Syndrome and the great need for research and fundraising for a cure to be found.

The time when I ask you to join with me and share your photos on all your social media sites.

I want all your friends, colleagues asking you about the hashtag. I want everyone everywhere learning about Rett Syndrome.

I want #nomoreemptyarms to be in every timeline, Instagram, Facebook, Twitter, Tumblr and all those I have yet to learn to about.


Because awareness is so needed.

So many times when I speak about Livvy and share what I lost her to people ask me "what is Rett Syndrome".

Its still so relatively unknown.

I want people to know that Rett Syndrome is a rare neurological disorder that affects mainly girls but also boys.

That every 90 minutes a girl is born with Rett Syndrome.

That children lose their lives to the complications of Rett Syndrome.

Why am I asking you to share just a photo?

It is simple, sometimes an image can speak louder than a thousand words.

Please look at this photo of Livvy and I, its beautiful isn't it.


Now realise this, my arms are now empty.

Never again will I get to hold my sweet girl again.

Never again will I get to twist her blond curls in my fingers.

Never again will we exchange butterfly kisses.

Never again, because of Rett Syndrome.

My heart is forever broken and it is this pain and the missing that makes me determined to fight hard for the cure for Rett Syndrome. To fight on that no other parent has to feel my loss.

Seems a little far fetched but I promise it isn't.

In 2007 researchers proved in the laboratory that Rett Syndrome can be reversed, giving it the potential to be the first curable neurological disorder.

Can you imagine how I felt that day?

I remember it as if it was yesterday.

On that day I and thousands of parents of children with Rett Syndrome were given hope. My husband and I sat there with Livvy in our arms crying tears full of joy, full of promise.

Yet time did run out for my Livvy and whilst this often consumes me, I am so aware that it hasn't for others.

Hope is there.......

For Brooklyn


For Lucie


For Charlie


For the thousands of girls who need us to shout out about Rett Syndrome.

Who need us to raise awareness

Who need us to fundraise

Who need us to be their hope.

So join with me today and become this Hope in action.

Take a photo with your loved one in your arms, upload it with the hashtag #nomoreemptyarms

Join with me and get people asking you what the hashtag means, send them here to learn more about campaign and about Rett Syndrome.

Lets get Rett Syndrome out of the shadows.

There is Hope for #nomoreemptyarms.

For more information on Rett Syndrome check out

Reverse Rett

Rett UK

Livvy's Smile