Hayley's trail-blazing medical experience

The brave nine year old is now on a course of Farnesyltransferase Inhibitors in the first clinical test of children suffering the rare genetic ageing disease.

Progeria affects just two children in Britain at the moment and there are approximately 40 around the world.

It mimics the characteristics of normal ageing but up to eight times faster, bringing arthritis and heart problems as well as baldness and growth restrictions.

Hayley, of Meadow Crescent, flew to Boston just over a month ago for a series of tests and assessments before being given the green light to take the new drug.

She wasn't alone though - parents Mark and Kerry were with her all the way, as well as younger brother Louis and sister Ruby.

Kerry said: "We arrived at the hospital on the Monday for baseline testing, to get a baseline of everything before she actually took the pill. It involved dexa scans, which measure the density of bones, dentistry, audiology, ECGs, echo, stress tests, blood tests, everything.

"We had to stay in hospital overnight once so that she could start a glucose tolerance test at 8am...then it didn't happen until 10am anyway.

"It was a long old day...but then most of the days were, starting there at 9am and probably leaving at 5-6pm in the evening. They were long old days. Then she was quite poorly on the Tuesday which was nothing to do with the tests but just from the flight or something - she was a bit dehydrated - and it was very hot out there, 93 degrees on some days.

"She just took it all in her stride, like she normally does. It was difficult for us to watch her going through the tests but she is used to it. She has been through these tests before, at the National Institute of Health in Washington, so this was not a new experience for her.

"For quite a few of the tests she just lays there, and some of the time she even goes to sleep."

Kerry said she and Mark felt "excited, but nervous" when Hayley took her first pill on Thursday May 24.

"Basically nobody knows what is going to happen - they can only tell us what has happened to progeria mice.

"But Hayley took it all in her stride - she always does with things like that.

"Then I was not as nervous as I thought I would be the day of her having the pill. I was quite excited, and I think she was too. It was a historical moment after all, and she was filming it with her camcorder for Hayley's Diary. She was saying - I am going to take my pill...I have taken my pill! And she held up a piece of paper to the camera to show what time she had taken it.

"She is the first one to take the pill - the other children, because of their weight, had to take syrup instead."

Today Hayley is on her way to an international reunion of children with Progeria in Orlando - it's an important five day get-together for victims of the disease as well as their nearest and dearest.

Last year's was a "quiet" event with just 13 children able to attend.

In August, they will be packing again to go to the European Progeria meeting, then it's back to Boston in September for the next round of hospital checks which happen every 16 weeks.

Hayley, a pupil of Sidley CP school, has recently finished filming her third documentary for Channel 5 which should be broadcast at the end of this year - the film will end with her at the airport waving goodbye as she goes off for treatment.

"She is doing alright", said Kerry