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.


As a mom of children who have complex care needs that often require medical support and hospitalisation. I have had many opportunities to witness the dedication of junior doctors. I have seen compassion and professionalism in the midst of exhaustion.

Yet no matter how hard they work the present government doesn’t seem to believe it’s enough, trying to force them into working unsafe hours putting themselves and the patients they care for at risk. 
This week the junior doctors decided to say enough is enough. They have asked that the government listen to their concerns and worries for patient safety. They ask that’s they be allowed to do what they have trained for and protect patients not to put them at risk.
I was completely behind the junior doctors on Tuesday and I continue to stand beside them today. Jeremy Hunt is risking the lives of patients and in the process also trying to destroy our great NHS.

I’m not willing to sit down and let this happen. I dread to think of where my daughter would have been without the amazing care and treatment she received from the NHS. How my foster sons now would be.

I am actually writing this from a hospital ward and here on the front lines all I can see are professionals who deserve a hell of a lot more respect from our government than what they are currently receiving. Nurses, Doctors, Consultants and so many more dedicated hard working individuals. It’s about time our present government realised the true value of these people and work tirelessly towards restoring the pride of Britain, our NHS. 

I want to see politicians working as hard as the medical profession in putting people first. Let them realise that privatisation is not the way forward and that fair working hours is not only about financial impact but also is a must for public safety.

As for me I will continue to stand behind the junior doctors and all those working towards keeping people safe.  

I will continue to be extremely grateful to the Dr that worked on my son today, the theatre staff that held me when I broke down in tears. To the nurses that showed me patience and kindness and to the many more medical professions that have blessed my life. 

No price can be placed on human life, Jeremy Hunt needs to remember this. 

I stand beside the junior doctors, I stand beside the nurses of the future and I will continue to support all those fighting to save our NHS.