Frequently Asked Questions

Here are some of the questions that people often ask us...

'How did you find out that Hayley had Progeria?'

We had a fairly normal pregnancy with Hayley. There were no major problems other than a few kidney infections. She was born on 3rd December 1997 after a 40 hour labour. After we had been home for a couple of weeks, we were concerned that Hayley was not putting on weight. Our health visitor advised us to stop breast-feeding and try bottle feeding, thinking that maybe the milk supply was not rich enough. Still having concerns about her weight, we had convinced ourselves that something was wrong. It wasn’t until Hayley was 1 year old that doctors were also showing concerns. The only symptoms that Hayley was showing at this stage was being under weight and very small for her age and she had very tight sking aroung her tummy, almost as if there was cling-film wrapped around her. The first medical diagnosis was that maybe Hayley had Cystic Fibrosis. This was later ruled out with a Cystic Fibrosis test. Hayley was then transferred to Guy’s Hospital in London and underwent a series of tests from having blood tests, chromosome tests and also having a a skin biopsy. All the tests came back as being normal apart from the skin biopsy. The results showed that Hayleys skin had no elasticity. This is consistent with the skin of an elderly person and also consistent with the skin of Progeria children. At a consultation at Londons Great Ormond Street Childrens Hospital on 30th September 1999 we were given the bad news about Hayleys condition...Hayley had Hutchinson Gilford Progeria Syndrome.

'How do you live with it?'

We try to lead as normal a life as possible. To us, Hayley is another one of our children and she likes doing all of the things that a normal 11 year old kid does. Our daily routine is pretty much the same as any family.

'How do you deal with all the stares?'

One thing that we knew from very early on was that Hayley was going to look very different from other kids and inevitably there were going to be looks and stares. After much discussion we decided that the best way to get over this was to try and raise awareness of Hayleys condition through the media. We have appeared on dozens of television and radio shows as well as several interveiws for local and national newspapers and magazines both in the UK and worldwide. We have also filmed 3 documentaries in the "Extraordinary People" series for Channel 5 in the UK and are still being repeated around the world on Discovery Channel and TLC. Now the majority of people come up to us and ask us how we are doing and tell us that they recognise us from the television instead of staring and wondering why Hayley looks so different.

'Does Hayley go to mainstream school?'

Yes, Hayley is in her 6th year at mainstream school and (most of the time!) enjoys it. She has a lot of friends and gets on well with her teachers.

'Can I make a donation?'

Yes, you can send cheques or money orders to;

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

Or, you can make a donation using Paypal by clicking on this button,

and by Nochex by clicking on this button,

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