Progeria: Little Princess (Five)

Member Name: marcellep

Product:	Five
Date:	10/05/05 (3864 review reads)
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Hi and thanks for reading this review on the little girl Hayley Okines and her condition Hutchinson-Gilford Progeria Syndrome.

Possibly some people would have watched the television programme last night on channel 5 (09-05-05) If you did or did not please read on.

Hayley Okines is a little princess aged 7, she lives in the UK with her family the only difference is that Hayley suffers from a condition called Progeria.

Progeria

Is an extremely rare genetic disease that accelerates the aging process about seven times the normal rate. So what does that mean, It means a child who is aged 10 and they are a sufferer of this rare condition will have similar respiratory, cardiovascular and arthritic conditions of a 70 year old would have.

The condition Progeria only affects between 1 in 8 million (reported) children. There are only between 30 and 40 reported cases of Progeria worldwide to date.

To date there are only 4 case of Progeria in the UK

Features of this condition in children include dwarfism, wrinkled aged looking skin, baldness, and a pinched nose. The Childs mental ability is the equivalent to other children of the same age. Children with this rare condition are unlikely to live past there early teens, There has been one or two case where children with the condition have lived until there early twenty’s.

There is no cure for this condition, in fact until recent years there has been very little research.

Hope the above gives you an insight to the condition.


As I said this is about Hayley and for Hayley.

I have always kept up to date with how Hayley is doing. I read a lot in the papers about this lovely little girl and watch as many programmes I possibly can about this rare condition.

Hayley was born with the condition but unfortunately it was not diagnosed until she was one year old that was in 1999. Due to the rareness of this condition Hayley was diagnosed with several other conditions before she was correctly diagnosed with Progeria.

Hayley is still an very active little girls in many ways, She goes to main stream school and has many many lovely friends. She has met many famous people including Kylie , Brian McFadden, John Terry (Chelsea) and many more. She has been invited to many celebrity bashes including Children of Courage Awards. Hayley is well travelled as her condition takes her too many functions and seminars.
As there is no cure for this condition, Hayley’s parents can only give remedies and medicines to make her quality of life as good as possible.

Hydrotherapy,

Hayley does this once a week at her local pool, this is designed to relax, and help pain. It is also to stop here arthritis getting any worse

Aspirin,

People believe that an aspirin a day keeps the doc away; Well studies have shown that taking an aspirin a day can reduce Heart attacks and Strokes. Hayley takes half a 75 mg tablet a day.

There are several more medicines that Hayley does take each day, But I would prefer if you read all that in the link below.

Now I am not going to write any more about Hayley and her condition I would appreciate if you would read all about her condition on her own web site.

Ways you can help Hayley

Leave a message in her guest book
Send her a donation: Details of her paypal account are on her website
Post a donation: As above

I would really appreciate if people would visit her website and leave a message in her guest book, I am sure you will be touched when you read all about this little princess in her own words. Take the time to look at all her pictures.

The main reason I decided to write this was to raise awareness of Hayley and her condition, myself and my wife we really touched and moved by the television programme. Watching the TV programme was so moving it brought a tear to my eye and a lump in my throat.

I am only asking people to visit her site and if possible to leave a donation.

I will be donating each and every month to this worthy charity.

Thank you and please say a prayer for Hayley.



Links:

Hayley’s Page: http://www.hayleyspage.com
Sunshine Foundation http://www.sunshinefoundation.org
Progeria Research Foundation http://www.progeriaresearch.org/index.shtml


I can’t stress how much I am willing to help this little princess.



NOTES:

I have send a letter to Hayley’s parents making them aware that I planned to do this review and my intention to get as many people as possible to view Hayley’s website and of course raise as much money as possible

Once you read this please ask your friends and family to read it too.


Many Thanks

Robert

God bless Hayley you little princess

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