It’s October 

October is Rett Syndrome awareness month and normally each year I am sharing here and everywhere as much information as possible to raise the awareness on this syndrome. 

This year I have struggled.

Not because it isn’t as important anymore because it definitely is, but because I am angry.

I’m so angry that Rett Syndrome is still taking children from their parents. 

That Mother’s, fathers ,sisters, brothers grandparents are broken hearted.


I’m angry that my friends have to go to sleep each day just praying that their child will awake in the morning.

I’m furious that so many are in hospitals fighting infections, seizures, recovering from seizures. Families separated, families struggling. 

I’m frustrated that no matter how far the research is coming Charities are still being the ones to fight for funding to save our girls. That government funding is few and far between. 

It’s another year, another October and we had lost another. 

Another too many

Another too soon 

Another heart broken.

So yes October is Rett Syndrome awareness month but for those fighting against this syndrome October is another month in a year full of battles, heartache and fear.

I’m so angry at Rett Syndrome. 

We need a cure and we need it now. 

Let’s end October with a bang. 

For the last 23 days I have asked you to join with me and support my #nomoreemptyarms campaign. Asked you to upload an image with you and your loved ones with the hashtag #nomoreemptyarms. All this in hope that we could raise a discussion from the hashtag about Rett Syndrome, generating awareness and understanding is what I was hoping and praying for.
  

You all have supported me incredibly, and again I have been shocked at the momentum that the hashtag has created. My heart has been blessed by the comments, by the questions and by people saying “they didn’t know what Rett syndrome was but do now”. It’s been truly awesome. But now as we reach the last 8 days of October and the final days of the Rett Syndrome awareness month I’m going to ask you to do something more for me.

I’m going to ask you to donate £5 to Reverse Rett and do so in honour of my empty arms, my Livvy. 

  
I want you to join me in fighting against Rett Syndrome and shouting out loud #nomoreemptyarms

  

£5 may not seem a lot, a price of a coffee, a magazine but in fighting against Rett syndrome every penny counts. 

So please make a donation now in honour of my Livvy and for all the parents out there whose arms are now empty because of Rett Syndrome. Then tweet me, Facebook me or just let the world know that you have donated and that they can too. Help share the fundraising link far and wide.

I’ve just donated £5 to Reverse Rett because I want to make sure that there are #nomoreemptyarms you can to. https://www.justgiving.com/Nomoreemptyarms

Please do this for me in honour of my Livvy, do this for all the children fighting against Rett Syndrome today and please do this so that we can be fight together so that no other parent has to lose their child to Rett Syndrome. 

The cure is within our reach, make our hopes a reality. 
Please visit my just giving page. 

  
Please donate here today 

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

  

  

We need a cure now

Sometimes I just want to scream, everywhere I go I find my memories. I cannot hide, should I want to hide?

I feel emotions from every angle, grief, anger, loss, fear.

Is it wrong to want to hide?

Facebook is full of the devastating news that another girl has lost their life to Rett syndrome in fact I found out that it’s another two.

Heaven is filling up too quick with our angels. It’s not right, it’s not fair. The cure needs to be found now!

Of course when I hear this tragic news my heart goes straight to the family. My heart aches as I know the pain they are facing, my heart still bear’s the burden of this pain.

Burden of pain, is it wrong to say that?

To be so exhausted of my emotions to be complete depleted by the endless pain.

I hate Rett syndrome with all my heart. It’s evil, it’s wicked. It’s the reason I cry myself to sleep most nights, it’s the reason I have to close my eyes and dream of holding my daughter again.

Please let’s have this cure now. Let my heart be filled with hope for my friends and their daughters.

Let my exhaustion become their exhilaration.

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The Thief In the Night

October sees the start of a month long campaign to raise awareness for a condition called Rett Syndrome.

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.

As the cascade of Rett symptoms descends, girls lose acquired skills, normal movement and speech. Girls are left unable to communicate or use their hands to hold, carry or manipulate objects.

Over time, girls who have learned to walk often lose that ability as well. Loss of motor control sets in, essentially locking these girls into bodies that won’t work, leaving them without the ability to make purposeful movements.

Complications are many, including:

  • Disordered breathing
  • Severe digestive problems
  • Difficulty eating, chewing and swallowing
  • Orthopaedic abnormalities such as scoliosis and fragile bones
  • Disrupted sleep patterns
  • Extreme anxiety
  • Seizures
  • Impaired cardiac and circulatory function
  • Parkinson-like tremors
  • Sudden and unexplained death

 At this time there is no cure for Rett Syndrome.

 

It is a disease which I hate with a vengeance. The reason behind my hate is simply this; it stole my daughter from me twice.

Let me explain…….

On May 5th 1999 I gave birth to a beautiful baby girl, she had the bluest eyes and cutest blond curly hair you have ever seen. We named this beauty Olivia.

Apart from a few feeding issues the doctor proclaimed my daughter to be perfect, as if I needed to be told. My daughter was perfection!

Olivia became known as Livvy and let me tell you she was mischievous from day one, a cheeky smile and a twinkle in her eyes that melted the coldest hearts.

Livvy was everywhere and into everything, she lived life at warp speed. I would turn my back for a second and find her climbing up the stairs, over the furniture or even helping herself out of the treats cupboard.

Her constant mom mom mom and dad dad dad used to drive me insane, if only I had known then what was around the corner I would have recorded, cherished everyone of those precious words. A few months later I would be on my knees praying, begging God to allow me to hear her call my name one more time.

It wasn’t to be, like a thief in the night Rett Syndrome came and stole our daughter away.

Loss of eye contact, autism, seizures, breathing abnormalities, tremors, Rett syndrome plagued my beautiful baby girl.

I find the human spirit incredible, the amount of pain you face yet somehow it restores itself. Of course you are never the same, but you move forward, living life, enjoying life.

Rett Syndrome had changed our world but it wasn’t going to be allowed to destroy it. Not if the fighting spirit of our daughter had anything to do with it. Life was for living and my goodness Livvy was determined to live it. Rett syndrome was what she had not who she was.

We had faced the worst and survived it. Well that’s what we believed until that fateful morning of November 7th 2008. The thief in the night had struck again this time it took our precious daughter from us for good.

Our hearts broke into millions of pieces, our world, our lives were destroyed and devastated words don’t come close to the pain that ravaged us.

How we survived I don’t know, it’s still a mystery today how our bodies carried on with so much pain. Broken hearts, broken spirits.

I have no answers.

What I do know is this, while there is breathe left in my body, I will fight for the cure of Rett syndrome.

The thief in the night is stealing too many of our children, it needs to be stopped and its needs to be stopped now.

Together we stand a chance.

Recent breakthroughs in medical research are making the dream for a cure a reality. But like most things in life there is a cost.

Join me and many others in the fight for the cure of this evil disease. Make a donation, hold a fund raiser and help raise awareness.

Together we can be the hope of millions of girls everywhere.

Let’s lock up this thief for eternity.

Please join me in supporting Rett Syndrome Research Trust UK.

I thank you in Livvy’s name and her memory.