How in the world are we already in October, where has the last month gone? Oh yes lost in a mess of sleepless nights, post traumatic stress and so much fear but that’s a completely other post. I need to focus on what October means to me right now and that’s it is Rett Syndrome awareness month.
Now if you have been reading my blog for a while you know I have a love hate relationship with Rett Syndrome, I loved a girl with Rett but I hate that it stole her from me.
My beautiful Livvy had Rett Syndrome, a neurological disorder that affected every part of her life, a neurological disorder that eventually took her life.
Rett syndrome is mean, it takes your beautiful girl or boy and steals them away twice. Livvy was born perfect, she walked, she talked, she smiled but then in the darkness Rett syndrome became the thief in the night and stole all this from her. Livvy struggled to walk and ended up using a wheelchair, Livvy lost her words, I lost the joy of hearing her call my name. Livvy lost the ability to control her breathing, hyperventilating to the point of blueness. Seizures, evil seizures tearing into her days endlessly robbing her of her joy.
Livvy lost her life to Rett Syndrome, again the thief in the night came and took her away from me. Leaving emptiness and brokenness where a blond haired bundle of joy once was.
Rett syndrome is an evil and one I want the world to know about. One I want to shout about. I want a cure so desperately, yes I know it’s too late for Livvy but not for the other beautiful children out there fighting against this syndrome. I want a cure so our girls and boys can live life free from this evil. I so want this cure so that moms and dads can sleep at night without fear.
I want this cure now.
Please God now xx