Before our world changed.


Do you see the photo above? That was taken when life was just normal, when everything was ok, not perfect as life never is but it was certainly ok.

I was a mom to three cheeky young girls and happily expecting number four. The only health worries we had was a case of severe reflux but hey whats a few vomits between a mother and her daughter.

At this time that cheeky young lady you see on the photo was fine. Passing all her assessments, toddling everywhere, climbing stairs, talking, laughing and generally causing mischief.

So many nights we were woken to this adorable girl happily banging about in her cot calling mom, mom, mom.

If only I knew then that in the space of a few weeks I was never to hear that precious voice again i would have recorded hours and hours of video and printed the memory into my heart numerous times.

Rett Syndrome had always been there but had stayed hidden like a sleeper agent getting ready to form a coup and topple a government. Rett syndrome lay sleeping ready to attack and rob me of my beautiful baby girl.

It was such a hard few months the celebration of a new birth was haunted by the loss of our daughter into a world that we couldn’t visit. A world that frightened my baby girl, a world that caused her to scream out in fear most nights. That caused her to bite herself in frustration as she tried to understand what was happening inside her own mind.

For such a long time we believed we had lost her. But the enemy known as Rett syndrome didn’t vantage into its evil plan the courage and strength of my amazing Livvy slowly and surely she fought back and returned to our world. That beautiful smile again lit that precious face once more. The damage was lasting and Rett syndrome wasn’t going anywhere but the spirit of our truly inspiring daughter never gave up.

Life was different, life wasn’t easy but life was so blessed.

As you know Rett syndrome won the final battle on November 7th 2008 and while I know that Livvy is free from its evil grasp in heaven nothing will stop me fighting to defeat this evil here on earth.

The thing is we are close, thanks to the amazing knowledge of incredible scientists we are so close. The cure is almost within our reach.

So please help me fight this battle, check out Rett Syndrome Research Trust or simply google Rett syndrome.

Help me help stop others losing their daughters to this evil. Lets make it possible for parents to hear the word mommy or daddy everyday.

What I would give to hear Livvy call my name one more time.

Please take another look at the photo above and google Rett Syndrome today.

October is Rett Syndrome awareness month, so please indulge me why I bombard you with information regarding this devastating disease.


2 thoughts on “Before our world changed.

  1. Karen Alderson

    Thank you Sara, your words have moved me (again) I’ll check out the website, I know nothing about Rett syndrome, sorry it took your lovely Livvy away, I’m looking forward to hearing her laugh and chatter in joy one day xxxxx


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