Hayleys an extraordinary girl
Hayley possesses one of the strongest life-forces we have ever encountered.
Introduction
My name is Hayley Okines and people tell me I am special.
I have a disease called Hutchinson-Gilford Progeria that makes me age eight times faster than other people.
The easiest way to explain it is itâs like my body is a hundred years old when I am actually thirteen, but I donât like it when people call me old because I donât feel like I am a hundred years old.
I am smaller than other kids my age. I have a brother, Louis, who is nine and a sister, Ruby, who is six. Although I am the big sister in the family they are actually bigger than me.
Mum says I am one in eight million because my condition is so rare. I have had lots of TV programmes made about me because I am so different, and people I donât know come up to me and say, âHi, have I seen you on the telly?â and I have to smile and be polite.
Living with progeria is hard because people treat you like a baby. The worst is having all the treatment and needles. I have been going toAmericafor special treatment that we hope will cure my progeria. I know the new drugs will not make me look like other kids but they will help me to grow hair and live longer.
Sometimes people ask me if I could have three wishes would I wish I didnât have progeria. And I say no. It would be good to not have it, and it would be fun to go out and not get stared at and not have loads of people ask questions. I would rather have progeria than not have it, though. Donât ask me why, but I wouldnât change it.
When Mum and Dad first found out I had progeria the doctors said I would only live to thirteen.
On December 3 2011, I will be fourteen.
I am not worried about dying. They said the Titanic wouldnât sink but it did, so that proves experts can be wrong and I want to prove the doctors wrong.
My life with progeria is full of happiness and good memories. If I didnât have progeria I would not have done most of the cool things I have done or met most of the cool people I have met.
Deep inside I am no different from anyone. We are all human.