It came again, the thief in the night has visited another family leaving broken hearts in his wake. Day or night It doesn’t care how much damage it leaves behind he just steals pure beauty with no remorse, no shame. Mama’s arms empty, Daddy’s laps clear and siblings smiles lost. 

I just want to cry, cry in anger, scream in frustration, we are close to stopping this thief but close doesn’t feel enough right now. 

Rett syndrome is a robber of so much, it comes first to kidnap their smiles, trapping them in a world they cannot understand, a world we struggle to be part of.  It plunders their mind carrying away their spoken words in his sack. Robbing our children of their breath destroying the stillness of their brains. Stealer of their peace. 

I hate it so much. 

I hate knowing that right now another family is forever broken, that they have a wound that will never heal, a missing piece, forever missing. 

I hate that others are scared to breathe deep, hoping and praying that their child will get through this next battle. 

I hate that another child has been diagnosed today, that another family are walking the pathway of fear. 

I hate Rett syndrome. 

I cannot hide behind the smiles today or pretend to be brave, Rett syndrome was what Livvy had and whilst it did not define her, it did steal her from me. 

My thief in the night came and stole my heart and I couldn’t stop it. 

How I wish we could capture this pirate, I want to anchor it to the shores never to sail again. I want treatments, I want therapies and I want a cure. 

Yet I know this is too late for so many right now, 

It’s too late to heal forever broken hearts 

And my heart aches so desperately for all. 

Losing a child consumes you, the pain is beyond anything you can ever imagine. You don’t expect to survive it, part of you doesn’t want to. 

Yet somehow we have to, have to keep fighting, keep breathing, simply one breathe at a time. 

It will be ten years in November since the thief in the night stole my beautiful girl from me and whilst I know we are close to stopping him we still have so much work to do. 

I am so proud of what Living like Livvy is achieving, educating, building awareness and of course raising much needed funds for research.

Yet I know more needs to be done, we can not become complacent because Rett Syndrome is never content, enough is never enough for this evil syndrome. 

We have to fight, we have to raise awareness, we have to fundraise for research and treatment. 

Until the day comes when the cell doors swings shut on this thief, I will fight.