This is not what I had planned to post tonight. I had thought of something funny and a little bit witty… But after reading that I kinda thought it would be more important to raise awareness for something worthy than to publish what I had planned for today.

I got to stop and think after reading some more at Walking With Angels and chatting with Sara on Twitter and I really have no idea what I would do if I lost one of my kids. I don’t wish it to my worst enemy and if I can help raise awareness for something that can save someone else’s kids, then I am more than happy to sede this space.

Read it, discuss it, share it… help.

With you: Luvvy’s Smile

October is Rett syndrome awareness month.

Let me tell you something about Rett syndrome. Its evil and I HATE it.

It takes away your children. For me it seemed that overnight I lost my carefree baby girl. My darling daughter with the infectious laugh was replaced by a fearful girl who nearly disappeared under the weight of the complications.

Rett syndrome is from birth yet the symptoms do not become apparent until the girls second year. Livvy was about 22 months old when her regression occurred. No words can explain the pain as I watched this evil take over my daughter, her words lost, her motor skills lost, her mobility lost.

Rett syndrome is one of the most severe forms of autism. I know we were lucky with Livvy as after the impact of the regression seemed to fade, Livvy’s character, her strength began to shine through again. Livvy had one wicked sense of humour; many teachers got kicks up the bum or lost their chocolate biscuits. Her amazing spirit meant she was loved by so many, she touched so many hearts.

Complications from Rett syndrome involve;

• 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

If these were a checklist my daughter suffered with them ALL.

When back it 2004 Livvy was diagnosed we were told there was no cure. The Dr was kind but simply told us to enjoy her for as long as we had her. I remember the urge of wanting to just smack him in the face.

2007 became a year of hope for Rett parents everywhere. Scientific testing into treatments for the condition had brought forward an amazing result. Results had shown that they were not just able to help reduce symptoms’ they had shown signs of reversal. Imagine that reversing the damage of Rett Syndrome.

I’m remember the day vividly, my friend a fellow Rett parent phoned me in tears with the news. Coverage of the results was all over the media. Yes it was still in experimental first stages but for us parents we had just been handed a lifeline of hope.

My hope for Livvy ran out on November  7^th 2008 when on going to give my daughter a good morning kiss I found her gone. Rett Syndrome had won its battle and totally unexpectedly my daughter had passed away. My heart broke that morning and will never be fully fixed until we are reunited in heaven.

I have to confess that for the first year after losing Livvy I hated hearing the words Rett Syndrome why would I be interested in something that had robbed me of my beautiful daughter. The hope for the cure was no longer there for me.

Then one day I realised that I never wanted any other parents to face the pain of my heart. There is hope and I had to find my fighting spirit and raise awareness and help bring this hope into reality.

So this is why I am hijacking this blog, by sharing my story with you. I hope to teach people about Rett Syndrome and to ask you support us in our quest for the cure.

Rett Syndrome Research Trust http://www.reverserett.org.uk/ is a newly formed charity whose sole purpose is to raise funds into research for Rett Syndrome. The founders are all parents of girls who suffer from the devastating condition. Our hope comes at a cost, research, medical testing, trials all require funding.

I ask you all from my heart to help us raise funds for our hope. A cure for Rett Syndrome.

I also what to thank Yuri from the bottom of my heart, for allowing me to guest post on his amazing blog.  THANK YOU XX