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.