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 it’s like my body is 100 years old when I am actually thirteen but I don’t like it when people call me old because I don’t feel like I am 100 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 don’t know come up to me and say, ‘Hi, have I seen you on the telly?’ 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 didn’t 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. Don’t ask me why, but I wouldn’t 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 was fourteen.

I am not worried about dying. They said the Titanic wouldn’t 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 didn’t 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.

Old Before My Time: Hayley Okines’ life with progeria

 

 
Download Old Before My Time free on itunes

   Download your copy of Old Before My Time from itunes https://itunes.apple.com/us/book/old-before-my-time/id544240218?ls=1. It’s free until Saturday.              

 
Old Before My Time published in Taiwan

   

 
Hayley Queen of Hearts

Thanks to everyone who came to my Queen of  Hearts ball last week. I had an amazing time and we raised £4,000 for the next Progeria Reunion. Thank you to Jason Fry Photography for the lovely photos

 

Happy New Year to everyone. Me and Mum are getting ready to fly to Boston at the weekend for results of my drugs trials. We’re hoping for some good news. Mum says it’s going to be -20 out there, so I need to wrap up warm.

 
A Christmas photo from Hayley's album

Merry Christmas everyone. Thanks for all your lovely messages and cards. I hope Father Christmas is kind to you all. I’m hoping to get Justin Beiber concert tickets in my stocking.  

 
Old Before My Time Free on iTunes this week

Get your free copy of my book Old Before My Time now. For the next two days you can download a free copy from iTunes  https://itunes.apple.com/gb/book/old-before-my-time/id544240218?mt=11     –

 
Hayley wins Argus Courageous Child of the Year Award

Hayley was one of six special children named The Carol Barnes Courageous Child of the Year at the Argus Acheivement Awards in Brighton on Sunday. Congratulations to the winners http://www.theargus.co.uk/news/10012299.Standing_ovation_for_children_at_Argus_Achievement_Awards/

 
Argus Achievement Awards

Me and Mum are off to Brighton this weekend for the Argus Achievement Awards. Thanks to everyone who nominated us for the Courageous Child of the Year and Mum of the Year.  http://www.theargus.co.uk/yourargus/argusachievementawards/index/  

 
So glad Girls Aloud are back

Great news Girls Aloud are back on tour fopr their 10th anniversary. I hope I can get tickets for their Ten tour. Here’s a photo of me and Kimberley Walsh when I met them back stage in 2008. They were all so  lovely.

 

Thanks to AU Mom in Tennessee, USA  for this great review of Old Before My Time: My Life with Progeria by Hayley and Kerry Okines ‘Excellent read. I enjoyed the fact that the book was written in her own words. This little girl has such a positive outlook about life and death. She is such an inspiration [...]

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