Still we fight

Today is the end of Rett syndrome awareness month. Yet for so many Rett syndrome is something they live with at all times.

Rett Syndrome is in their lives forever.

After losing Livvy, I guess I could have walked away from Rett syndrome but the impact of this devastating syndrome would still haunt me. I couldn’t hide from Rett syndrome it had robbed me of my daughter. I couldn’t avoid Rett Syndrome because it still tortures so many that I love.

Right now in this world too many girls and boys are losing their battle to Rett syndrome. Right now too many are fighting hard against Rett Syndrome and right now too many tears are falling for Rett syndrome, missed moments, broken hearts and painful memories all at the feet of this evil condition.

I’m often asked why I still fight for awareness and for a cure for this devastating condition. Why I still allow myself to feel pain because of Rett Syndrome and wouldn’t it be easier to walk away from the community that I don’t have to belong to anymore?

I’ve said it before and will say it again, my fight isn’t over yet. I will fight until one day there is a cure for Rett Syndrome, it’s as simple as that.

Yes; I lost Livvy to this evil and like many who have lost a child I want to attack what killed her. I want to personally wipe Rett Syndrome from the face of this earth. I want no child’s body to broken by this condition ever again. I want no other parent to have to cry themselves to sleep after watching their child suffer at the hands of this evil and more than anything I want no other parent to face the pain, the torture of losing a child to Rett Syndrome.

But mostly I fight for the ones I love, for Brooklyn, for Grace , for Sophia, for Charlie, for Amber, for Estelle, for Beth,for Olivia and for every child that has the Rett syndrome diagnosis.

I fight for them.

I fight for my Livvy, because she would want me to fight to stop her friends from suffering, for their mommies and daddies to not live in fear, for their siblings not to ever have to say “my sister died” for no one to have to face the pain of loss again due to Rett Syndrome.

Part of me wishes desperately that I could live in a world that never had to hear the words Rett Syndrome again, but it would be like “he who should not be named” of Harry Potter, it’s evil would grow and grow in the darkness.

So no I cannot hide away until Rett Syndrome is brought out of the shadows, until everyone knows it’s name. Until funding is given and medical research is made, until a cure is found.

Until that day, we fight.

I fight.

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 

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 . –

So it’s October

So today is the start of October and to me that also means the start of Rett Syndrome awareness month.

This is a month that I work like to crazy to let everyone know about the devastating condition Rett Syndrome.

I have to confess I find Rett Syndrome awareness month hard.

Everywhere I go I am reminded of the condition that stole my daughter from me.

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I see the photos, the blog posts and infographics and to be completely truthful I want to scream.

I know this is wrong of me but as much as I want to raise awareness I also want to hide from all that is Rett syndrome.

But I can’t and I won’t.

I may have lost my beautiful girlie to this awful disease but I do not want my friends to lose theirs.

I want everyone to know about Rett Syndrome.

I need everyone to know what amazing strides are being made in research.

I must make everyone know how much fundraising is needed to help fund research and to also help support those effected by the syndrome.

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So self pity aside October is Rett Syndrome month and I will be doing my best to let you all know that this condition is out there.

What it is?

Debilitating neurological (movement) disorder that predominantly affects females.

Baby girls are born “normal” but begin to lose acquired skills between the ages of 1-3 years old.

Caused by a single gene mutation that leads to underproduction of an important brain protein.

The leading genetic cause of severe impairment in girls – most cannot speak, walk or use their hands.

Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.

As prevalent as Cystic Fibrosis, ALS and Huntington’s.

Who it affects…

Usually affects girls from 6 to 24 months leading to a devastating loss of developed skills.

That every 90 minutes another little girl is born with Rett Syndrome

And that the greatest news is that….

Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.

Did you get all that?

Outside of the Scientific community Rett Syndrome is still relatively unknown. Yet Rett Syndrome is a leading genetic cause of severe disability in females.

This is why we need to raise awareness.

People need to know more about Rett Syndrome.

They need to know that research into this condition has already shown the potential to help unlock other neurological conditions including Alzheimer’s and Parkinson’s.

What you also really need to know is that besides all these devastating symptoms what Rett Syndrome does not take away is the spirit of the girls who suffer from this condition.

Olivia was the strongest most determined girl you would meet. Although Rett Syndrome took away her voice it didn’t take away her desire to communicate. Her eyes became the window to her soul.

Olivia was so mischievous and so very loving her life was about love and laughter.

This is what we have to remember that behind the list of conditions there are girls.

Girls that want what we all desire.

To live life to the full.

To live a life not suffering from epilepsy, movement disorders, breathing abnormalities and so much more.

Help me make this happen.

Help me raise awareness of Rett Syndrome.

I hate Rett Syndrome with a vengeance but I love those girls fighting it everyday.

Help me make their future brighter.

More can be found out about this condition on the websites.

Cure Rett
Reverse Rett….
Girl Power 2 Cure

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Please share this post.

Such a loss

 

 

 

 

You would have to be buried deep somewhere last night not to have heard of  the tragic death of Robin Williams.

 

I am still in shock over the awful news.

 

Robin Williams was one of those men that made you believe you knew him.

 

From Mork and Mindy to Good Will Hunting his presence filled the screen.

 

Dead Poets Society was one of those films that changed my thinking.

 

It gave me the courage to challenge, to wonder.

 

That was Robin’s Williams gift to the world, one of wonder.

 

We have laughed so hard at his comedy moments and felt so deep with his straight roles.

 

The man was true talent.

 

 

There are many stories floating around  regarding the reasons for his death, many stating his depression.

 

This saddens me deeply.

 

Yet it is not surprising.

 

Its is true that many from the acting profession find themselves experiencing the lows after the highs.

 

They also find themselves not able to ask for help due to the extreme scrutiny on their lives.

 

I don’t want to speculate, I don’t know the truth of what was happening in Robin Williams mind.

 

What I do know is that mental illness is something that needs to be brought out of the shadows.

 

It is not something anyone should be made to feel shame for.

 

You can not be blamed for having a mental illness as much as you cannot be blamed for having cancer.

 

Yet it still lurks in the darkness.

 

It is time to stop the stigma and discrimination.

 

One in four people in Britain suffer from mental health problems.

 

ONE IN FOUR.

 

This is a frightening statistic and something needs to be done.

 

We need more funding into services and support but we also need more awareness raised to remove the stigma that is attached to mental illness.

 

My heart goes out to Robin William’s family .

 

I can only imagine the pain they are in right now.

 

But I want to raise awareness today.

 

If only to reach one person who is suffering right now.

 

I want them to know they don’t have to be ashamed.

 

They don’t have to hide.

 

Please contact someone to support you.

 

Get help.

 

 

Lets us raise our voices in memory of Robin Williams and all those that have fought a battle against mental illness.

 

Lets be united in ending the discrimination.

 

In the words of the late man himself

 

 

“No matter what people tell you, words and ideas can change the world.”

 

Robin Williams
 

 

Lets start the change today.

 

 

Rest in peace Robin.

 

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If you or anyone you know is suffering with a mental health issue there are places you can find support.

 

Unknown

Our lines are open 9am – 6pm, Monday – Friday

0300 123 3393
info@mind.org.uk
Text: 86463

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CALL US

If there’s something troubling you, then get in touch.

We’re here 24 hours a day, 365 days a year.

If you need a response immediately, it’s best to call us on the phone. (*call charges apply)

 

 

Seizures suck !!

Did you know that this week is National Epilepsy Week?

Its a week dedicated to raising awareness about Epilepsy.

I know a lot more about epilepsy than I wish and you know what?

epilepsysucks

 

Its as simple as that!

I have mentioned before on here that Livvy suffered from seizures. They constantly plagued her life. At times she would have over 100 seizures a day.  They effected everything she did. her balance, her ability to walk, even her eating. We nearly lost her numerous times to her seizures.

Today many of my friends children suffer with seizures, their lives are scarred by this illness.

600,000

Yet little is really known about epilepsy.

When asked many describe the image of a person shaking on the floor violently .This does happens but the thing is there are various types of seizures that are relatively unknown. Some are barely even visible.

Still they effect lives.

Did you know?

 

Crazy isn’t it.

So do me a favour today, pop over to the Epilepsy action site and learn more about this condition.

epliespsy thank you x

 

Epilepsy awareness day

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Today is Epilepsy awareness day, a day where people across the world, share,educate and inform people about this condition.

I am too aware of epilepsy as it was condition that Livvy suffered from severely. A condition that played a big part in her death.

Livvy suffered from uncontrollable seizures, one time we counted over 106 in a day. We tried many medications and fought hard not to let them to control her life.

Lets just say it was an ongoing war,one which sometimes we won the battle other times we lost.

Epilepsy can be scary for both the one having the seizure and the one watching.

Epilepsy is also surrounded by myths, not that long ago sufferers were accused of being demons. Thankfully times have changed but still the need for awareness is there.

So I ask you today to click this link and learn more about this condition.