I Lost My Daughter To Rett Syndrome - Now I'm Sharing My Story To Help Others

Rett Syndrome effects 1 in every 12,000 girls, yet these numbers do not reflect the devastation this condition has on children and those that love them

When you are facing some of your hardest moments you can take some comfort in the knowledge that you are not alone. People crave for stories of others who have lived through their journey’s. Companionship, empathy, understanding all these things are so desperately needed to survive.

Sharing your story isn’t easy, personally right now I actually would like to run away from the identity of a ‘bereaved mother’. I would love nothing more than to pretend that I did not lose my child. To hide in the pretence that she will return home on the school bus today, that I will hear her giggle once more.

Yet here I am doing the complete opposite to this, here I am openly encouraging people to know my heart, to read my story.


Why in the world am I doing this?

Because I need to!

Right now a child is being born with Rett Syndrome, a child who is going to face a lifetime of disability, pain and confusion.

Right now a mother, a father, a family are waking up realising that their world has completed changed, there is no going back to the naivety of yesterday.

Rett Syndrome effects 1 in every 12,000 girls, yet these numbers do not reflect the devastation this condition has on children and those that love them.

Part of writing ‘Living like Livvy’ was to raise awareness of this condition but to also give an insight to those on the outside. A small glimpse of what it really is like to walk the Rett Syndrome pathway.

Now I cannot or would not speak for others but if by sharing my story I make one parent feel less alone it has been worth it. If by reading ‘Living with Livvy’ one family member, one friend learns a little more which enables them to support and encourage a family, its been worth it.

Losing Livvy nearly destroyed me but living with Livvy came close to doing the same at times. I have never felt so alone, I have never experienced such fear.

Yet having Livvy taught me so much about life, I learned to live fully and to love hard. I cannot say I have no regrets in life, I’m human after all, but one thing I am a hundred percent sure of, is that Livvy knew how loved she was. We never took a day for granted, never withheld hugs and ticklefest’s well, they were as important as her medication.

The truth is as a society we hide away from talking about death. It’s as if loss is a dirty word. This has to change, because the reality is we all will die at some point, thats the only thing guaranteed. Yet acknowledging this isn’t morbid or miserable, its actually liberating. Because it’s not how you die that really matters but how you lived.

Olivia did living well, she loved life with an enthusiasm that was so contagious she would light up a room with her smiles. Nobody could be miserable around Livvy she just would not allow it. From giggles in intensive care to mischievous laughter on a campsite, my girl she lived and she loved.

Yes I often want to allow the pain of grief and the agony of missing her to swallow me whole but I know she would kick my butt hard. “I taught you better” echoes in my head and you know what she did.

So I’m trying my sweet girl;

‘Living like Livvy’ is a book that will make you cry but it is also a book that will make you laugh out loud. But more importantly its a book that is fighting back against the condition that stole my child away from me. Every single royalty from this book is going straight to Reverse Rett UK. Every penny raised will be used towards treatment and research for the cure of Rett Syndrome.

It’s hope in action.

So do me a favour today and in the weeks ahead, first of course go buy ‘Living like Livvy’ and help raise awareness about Rett Syndrome and the much needed funds for research. But also go live like Livvy, plan that crazy fun day out, book that much wanted trip, eat that much needed desert. Go hug those you love, smile at strangers and make the moments matter.

Livvy certainly did.