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 about 50 known cases of Progeria around the world and only 2 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.
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.
Click here to find out about a song for Progeria Research...
Or...
Visit Hayleys Hope...Progeria Research Support in the UK
Correspondence can be sent to;
Hayley Okines
PO Box 178,
Bexhill on Sea,
TN40 9AF
You can now donate to Hayley by Text!
To donate £3.00 text the word 'HAYLEY' to 81303. You will receive two confirmation messages charged at £1.50 each plus your standard network charge. Hayley's Trust Fund will receive an average of £1.90 which will help fund Hayleys treatment in Boston.
