The story of Charlotte
Hello world. My name is Charlotte and I am 18 months old, living in Sydney, Australia.
3 months ago, I was diagnosed with a very rare (1 in 500,000) genetic condition called Cockayne Syndrome (Type I).
CS is a particularly cruel condition that will prematurely age my body and mind, with a life expectancy of between 10 and 20 years 💔. Skills that other kids develop naturally (like walking, talking) will be harder for me to achieve. As I age, my vision, hearing and brain function will decline, resulting in severe disability.
I have my family, friends and a team of amazing Doctors and therapists helping me to be the best I can be, but there is no cure …. Yet. There are a few teams of super intelligent human beings around the world working to find a cure and I am hoping a cure or treatment is possible for me.
In the meantime, I am determined to take on the world as best I can.
Follow me on Insta @Charlotte.vs.world.