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Welcome to Hayleys Progeria Page!

 

This website is dedicated to our daughter, Hayley Okines who suffers from an extremely rare genetic condition called Hutchinson Gilford Progeria Syndrome, also known as HGPS or Progeria. At present there are around 74 known cases of Progeria around the world and only 4 in the UK, which is where we live. Progeria is a progressive terminal condition which mimics many of the characteristics of the normal ageing process, but faster...a lot faster...about 8 times faster in fact! A 10 year old progeria child will have the appearance of an octogenerian with symptoms including baldness, arthritis and heart problems...but with the mind of a 10 year old!
The average lifespan of children with Progeria is about 13 and at present there is no cure...but its close!
The purpose of this website is to educate, inform and most importantly raise awareness of this little known disease. When Hayley was diagnosed with Progeria in 1999 we had never heard of it and neither did any of our friends or family. With the help of the internet we were able to build an understanding of Progeria as well as finding organisations and individuals that can help.


EXCITING NEWS!!

Please look out for Hayleys new book, 'Old Before My Time' which is available on Amazon here.


If you would like to make a donation, all funds are going towards Hayley's ongoing treatment in Boston.

You can donate by Paypal by pressing the button below

Correspondence can be sent to;

Hayley Okines
PO Box 178,
Bexhill on Sea,
TN40 9AF



 

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