Feb 142013

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

Jun 182012

I can’t believe it. My baby brother Louis is 10 today. He towers above me now. This photo was taken when he was a baby. I used to call him a ‘little piggy porker’ because he drank so much milk.  

Jun 172012

Happy Father’s Day, Dad.  His proudest moment was the day I was chosen to be match mascot for his favourite team Chelsea in 2004. He said he was ‘priveleged to be my dad.’ That’s why he’s the best dad in the world.

Hayley and dad Mark at Stanford Bridge, home of Chelsea Football Club

Jun 022012

My little sister Ruby is seven today. Happy birthday Ruby! Here’s a picture of me and Louis when mum brought her home from the hospital. Although I am her big sister, she’s bigger than me now.

Hayley with sister Ruby and brother Louis


May 212012
Me and John Terry

Loving this photo of me with Chelsea captain John Terry when I was team mascot in 2004.

Apr 242012

I can’t believe it’s a year since I met Willow Smith at the Justin Bieber concert . When she was on stage she saw me in the front row dancing and waving and she waved back. When she finished singing one of the bodyguards came up to Mum and said Willow would like to meet me back stage. I thought that was really cool. We went back stage and everyone was looking at us thinking, who are they? Why are they going back stage? I felt really special.

Back stageWillow came out of her dressing room to say hello. She was really wicked. I said I thought she was a really good singer and she asked if I would have my photo taken with her like I was the famous person not her. Then she asked for my address and gave me her email and told me to email her anytime.

Apr 092012

Old Before My Time: Hayley Okines’ life with progeria‘The book is written in such way that it made me feel part of the story, part of her life. This book brought many emotions to me, sometimes made me laugh, sometimes my eyes got wet but in general it was a cute and nice reading [experience].’ John on Amazon

For full review: http://www.amazon.com/Old-Before-My-Time-progeria/product-reviews/1908192550/ref=cm_cr_dp_all_helpful?ie=UTF8&showViewpoints=1&sortBy=bySubmissionDateDescending