Weapons of hope

Can I tell you something Rett Syndrome sucks. No matter how loud i shout, no matter how much I raise awareness it still doesn’t change the fact that Rett syndrome sucks.

Rett syndrome stole my heart. 

My world was shattered, my soul forever scarred. 

Grief is a turbulent ride it twists you up and down and inside out. Just when you think you are coming to land it flies up again twisting the very air you breathe.

 A tornado in your soul.

I want to stop being angry, to stop wanting to scream out loud, I want to find peace. 

But I cannot, not until there is a cure for Rett Syndrome. Not until the thief is placed in a cage. Not until the battle is won. 

We will win this battle, the scientists are waging a war, preparing weapons of happiness.

Weapons of promise.


Weapons of hope. 



One day the weapon of the cure will be found and Rett Syndrome will be defeated.

Until then we will battle on, supporting the research with fundraising. 

Every penny in the arsenal against the enemy.

Against Rett syndrome,

Will will be hope in action, until there is #nomoreemptyarms

  

  

No slowing down

Last night my dream was so vivid that it felt so very real.

I was curled up on the sofa and under my arm with her head in my lap was Olivia.

Just lying there giving me a sweet cuddle.

I woke with tears rolling down my face.

An emptiness in my heart.

I just wanted to go back to sleep and just hold her one more time.

To stroke her soft cheek.

To play with her sweet curls.

Rett syndrome has robbed me of moments like this.

It took away my child.

While this dream did make me cry it’s also made me more determined.

Determined to really push the #nomoreemptyarms campaign.

To encourage parents, grandparents, brothers, sisters.

Aunties ,uncles, friends

To all give each other a hug whilst taking a photo and uploading with the hashtag #nomoreemptyarms.

To take a moment to make a memory.

To encourage people to learn about Rett syndrome and what it takes from our children.

We may be half way through October the month of awareness for Rett Syndrome.

But there will be no slowing down.

In fact I’m going to drive hard to make these last weeks really make a difference.

Going to push forward so that Rett Syndrome gets the awareness it so needs.

For people to understand, to learn.

To support.

Let’s do this.

Let’s say no to Rett Syndrome.

#nomoreemptyarms

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#Nomoreemptyarms

What a weekend!

On Friday I started a campaign called #nomoreemptyarms.

It was a way of raising awareness for Rett Syndrome

I was hoping that it would stir the hearts of everyone, everywhere.

I asked people to take a photo with their loved one in their arms and upload it to social media sites with the hashtag

#nomoreemptyarms.

I wanted to hit home what Rett Syndrome can take from people.

What it had taken from me.

Nomoremptyarms correct

 

I have been overwhelmed by the response.

All over the world people have joined in.

I am so excited.

I think we can take this even further.

October has 31 days let’s make each one of these days count.

Let’s get #nomoreemptyarms trending on all sites.

Share posts with all your family, friends, co-workers,

Tweet celebrities, journalists, pop stars, MP’s everyone.

Let’s bring the fight to Rett syndrome and say #nomoreemptyarms

My arms are empty but this weekend my heart has been overflowing.

Thank you all so much xxx

No more empty arms

I’m been thinking a lot about the fact that it’s Rett Syndrome awareness month.

Thinking about what it is we actually want to achieve.

Fundraising – yes

Awareness of the syndrome – Yes

Yet for me I want something more.

I want no mother and father to face the pain Alan and I have had too.

I want no brother or sister to cry themselves to sleep missing their sister.

Grandparents heartbroken.

I want no more empty arms.

So I decided that this month this is what I wanted to focus on.

Raising awareness and fundraising so that no mother or father is left with empty arms.

Rett Syndrome means I will never hold my daughter again.

So I’m challenging you all to help me raise awareness of this devastating condition.

Please take a photo of your child in you arms and upload it to your social media sites with the hashtag #nomoreemptyarms

Join me in raising awareness for Rett Syndrome.

Join me in stopping the pain.

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Also if you wish please consider donating to one of the Rett Syndrome charities.

Reverse Rett

Cure Rett

Or Via Olivia’s Page @ Girl Power 2 Cure . –